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TREATMENT ADHERENCE IN ADULTS WITH CYSTIC FIBROSIS: AN
EXPLORATORY STUDY OF THE INFLUENCE OF SELF-EFFICACY,
SELF-ESTEEM AND PSYCHOLOGICAL MORBIDITY
& RESEARCH PORTFOLIO
PART ONE
Laura Pettigrew BSc (Hons), MSc.
Submitted in partial fulfilment towards the degree of Doctorate in Clinical Psychology,
Department of Psychological Medicine, Faculty of Medicine, University of Glasgow
August 2001
I
ProQuest Number: 13818759
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INFORMATION TO ALL USERS The quality of this reproduction is dependent upon the quality of the copy submitted.
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a note will indicate the deletion.
uestProQuest 13818759
Published by ProQuest LLC(2018). Copyright of the Dissertation is held by the Author.
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Acknowledgements
I would like to thank my supervisors Sarah Wilson and Julie Metcalfe for their support,
enthusiasm and encouragement throughout the course of this thesis.
To my friends for the distraction, humour and sense of proportion. To my classmates for
their friendship and support. In particular to 'study group' for getting me through the tough
times and supplying me with laughter, understanding and so many happy memories. To my
family for tolerating me through another degree and to Nick for the juice, chocolate and
music to watch the statistics go by with.
But most of all, my sincere thanks goes to the individuals with CF for supplying their time,
effort and thoughts.
Ill
TABLE OF CONTENTS
PART ONE (this bound copy)
Pages
1. Small Scale Service Evaluation Project 1
Referrer awareness, utilisation and satisfaction with a dedicated Clinical
Psychology service in a General Hospital nineteen months after its introduction.
2. Major Research Project Literature review 28
Treatment adherence in adults with Cystic Fibrosis: a discussion of contemporary
research findings.
3. Major Research Project Proposal 56
Treatment adherence in adults with Cystic Fibrosis: an exploratory study of the
influence of self-efficacy, self-esteem and psychological morbidity.
4. Major Research Paper Project 75
Treatment adherence in adults with Cystic Fibrosis: an exploratory study of the
influence of self-efficacy, self-esteem and psychological morbidity.
5. Clinical Case Research Study Abstract 117
Night waking during infancy: an experimental investigation of the impact of
withdrawal of parental presence at bedtime.
RESEARCH PORTFOLIO APPENDICES Pages
Appendix 1 Small Scale Service Evaluation Project 120
Appendix 2 Major Research Project Literature Review 128
Appendix 3 Major Research Project Proposal 130
Appendix 4 Major Research Project Paper 143
IV
PART TWO (separately bound copy; numbered from page 1)
Pages
5. Clinical Case Research Study 1
Night waking during infancy: an experimental investigation of the impact of
withdrawal of parental presence at bedtime.
Appendix 5 Clinical Case Research Study 28
V
CHAPTER 1: SMALL SCALE SERVICE EVALUATION PROJECT
Referrer awareness, utilisation and satisfaction with a dedicated Clinical
Psychology service in a General Hospital nineteen months after its
introduction.
Laura E.L. Pettigrew
University Department o f Psychological Medicine
Gartnavel Royal Hospital
1055 Great Western Road, Glasgow, G12 OXH
Prepared in accordance with guidelines for submission to Health Bulletin (Appendix
LI)
Word Count 3100
1
Abstract
Objective: To examine referrer awareness, utilisation and satisfaction with a dedicated
General Medicine Clinical Psychology service 19 months after its introduction in a local
hospital.
Design: Questionnaire survey with background information obtained from the
departmental database.
Subjects & Settings: Sixty-two medical Consultants based within a General Hospital in
Scotland.
Results: Forty-seven Consultants (75.8%) responded with a single reminder to the postal
questionnaire. Overall, referrers were satisfied with the service, but were notably
dissatisfied with the current length of the waiting list. Unfortunately, the survey
revealed that the majority of Consultants (55.6%) were unaware of the service before
this contact. Nevertheless, respondents were very positive about the potential usefulness
of a range of psychological interventions and there was overall support for further
contact and/or information from the service.
Conclusion: The survey demonstrated that Consultants at this local hospital have an
awareness of the role of psychology in health, and an encouraging degree of enthusiasm
for the application of the skills of Clinical Psychologists in their speciality. However,
results suggest that Psychologists working within General Medicine must regularly
review and audit their services in order to ensure that all potential referrers are aware of
them. Moreover, further specialisation may be required within these services in order to
meet the demands of individual medical departments.
2
Introduction
Traditionally, Clinical Psychologists spend most of their time working with clients
referred to them by General Practitioners or by Psychiatrists within hospital settings.
However, over the last two decades, increased numbers of Clinical Psychologists have
begun working alongside a wide range of medical specialists. Their involvement has
been encouraged by research revealing the important contribution psychological factors
can play in mediating health outcomes and, concurrently, the usefulness of
psychological therapies within medical settings1,2. This work has evolved within the
rapidly growing field of health psychology, where psychological theory and practice are
applied to physical health problems3.
The Cambridge Handbook of Psychology, Health and Medicine1 examines
psychological theory relevant to 138 different medical conditions, investigations,
treatments and prophylaxes. Research has indicated that psychological problems may
present as physical disease4, may be secondary to physical disease5, may exacerbate
existing disease processes6, and/or may cause physical disease7. Psychological
problems may also prevent patients from either accepting or complying with medical
treatment8. Psychological interventions can therefore be used to increase the
effectiveness of conventional treatment, to modify the negative psychosocial effects
associated with some conditions and/or as an alternative to more traditional kinds of
therapy2. Psychologists have, for example, made significant contributions in the medical
fields of cancer and cardiac disease - two of the leading causes of death today.
Psychological interventions with cancer patients have been shown to effectively reduce
the distress associated with diagnosis9 and treatment10, facilitate effective methods of
coping11 and improve the quality of life of patients with disseminated disease12.
Similarly, psychological interventions have been shown to effectively reduce the
behavioural risk factors in both pre-MI13 and post-MI populations14, and reduce the
distress associated with an acute cardiac event15 and with cardiac surgery16. Importantly,
these psychological interventions are also cost effective, for example, by reducing
length of hospital stay17.
Thus, in terms of the established levels of need and documented efficacy the case for
services specialising in psychological care for patients in general hospitals is very
strong. However, Psychologists are dependent on the medical Consultants, and other
allied professions who are in charge of patient care, to provide appropriate referrals to
their services. Therefore, their specific areas of expertise must first be recognised by
these professionals. Moreover, the significance of psychological variables in the
development, maintenance, and treatment of certain medical illnesses must also be
considered by all those involved in the medical care of physically ill individuals.
Unfortunately previous research has shown that whilst professions allied to medicine i.e.
speech therapy, physiotherapy, dietetics and occupational therapy, consider psychology
services as relevant to their own work, some medical Consultants are ambivalent about
this type of service18. A recent study in the UK revealed that Consultants within adult
specialities of a large teaching hospital were both aware of, and positive about,
psychological interventions offered by the local department of Clinical and Health
Psychology19. However, despite their enthusiasm, 61% of the respondents in that survey
had not made a referral to the department in the previous year. Respondents also
frequently indicated that they “didn’t know” whether interventions would be useful or
not to patient care. For example, 69% of respondents chose this option when asked
about psychological interventions used to improve adherence with medical regimes. Yet
patient non-adherence with medical regimes is well recognised, and in this area
4
psychological interventions have been shown to improve outcomes20. Overall, it appears
that more detailed information is still needed regarding health care professionals' beliefs
and knowledge of psychological services. Without their awareness and endorsement of
such services, patient involvement will be minimal.
The current study focuses on a dedicated Clinical Psychology service to a local general
hospital. This service has been operating for nineteen months. It offers four sessions per
week, aiming to deal with 30 new patients per year. When the service was established
the service Psychologist wrote to the hospital's speciality advisors to notify them of its
availability. These Consultants were asked to circulate a specially designed information
sheet to the other Consultants for dissemination to their staff. The Psychologist also
contacted the Clinical Nurse Managers for outpatients and both medical and surgical in
patient departments to inform them and their staff of the service. In addition to meeting
with several Consultants, the Psychologist also addressed a group of senior nursing staff
(including cancer and stoma care) about the nature of the service.
The providers of this service are now keen to establish the level of awareness amongst
hospital Consultants and satisfaction with the service provided to date. There is the
potential for further investigating perceptions of usefulness of psychological
interventions within general medicine.
5
Methods
Aims
The main aims of the study were to assess awareness, utilisation and satisfaction with
the service provided to date. In addition, limitations of the current service and methods
by which further information could be provided were also examined. A secondary aim
was to examine Consultants' perception of usefulness of various psychological
interventions.
Design
Demographic information was obtained from the departmental database in order to
provide background data to the study. Case notes were examined if additional
information was required. A postal questionnaire was designed to achieve the other
main aims and sent to Consultants from all medical departments within the hospital.
Measures
As noted, a two part postal questionnaire was designed (Appendix 1.2). In order to
maximise return rate the questionnaire was kept short. Part one focused on the
assessment of satisfaction with the service and was based on “The Patient Satisfaction
Questionnaire"21. Questions that the service Psychologist felt important to address were
also included. Consultants were asked to complete this section only if they had made a
referral. Part 2 focused on the other main research questions with all Consultants asked
to complete it. The item focusing on “perception of usefulness” was based on discussion
with the service Psychologist and information gathered from previous research19. A list
of possible Clinical Psychology interventions was presented, and for each one the
Consultant was asked to rate whether they agreed or disagreed that it would be useful in
their area of work. They were given the option to respond that they would require more
6
information before being able to make a decision. This option was used as an alternative
to "don't know". A final option of “not applicable” was also offered.
Not all patients referred to the service will be seen during their hospital admission.
Consultants were asked to indicate the impact of this factor on the usefulness of the
service. Consultants were also asked if they would welcome further information about
the service. They were required to rank on the questionnaire their first and second
preferences from a list of possible methods of providing information defined by the
service Psychologist.
Procedure
Sixty-two Consultants were identified from the hospital telephone directory and
checked with the secretaries of each medical department. The questionnaire was sent to
them with a letter of explanation and a return envelope. Each questionnaire was coded
so that feedback could be provided if requested. This code was also used to identify
non-responders. A second questionnaire and encouraging letter was sent out after a time
delay of one month to all non-responders. Consultants were aware that the information
provided was confidential, although due to the coding system, not anonymous.
Results
I. Utilisation of the service (Information from database)
In the designated period, forty-two referrals were made to the psychology service from
departments based within the hospital. A further five referrals were passed on to the
service from other sources outside of the hospital. These are not considered in further
analysis because they are not relevant to awareness and utilisation of the within-hospital
General Medicine service.
7
Although there are 16 medical specialities within the hospital, most of the referrals came
from Physicians, Geriatricians and Orthopaedic Surgeons (Table 1). Moreover, referrals
came from only 14 Consultants, or members of their teams, out of a potential 62. Two
of these Consultants have since retired. Thus, three Physicians, two Geriatricians and
three Orthopaedic Surgeons account for 80.5% of the referrals from within the hospital
i.e. 12.9% of potential referrers are currently providing the bulk of patients to the
service.
INSERT TABLE 1 HERE
Analysis of demographic information revealed that twenty-six (55.3%) males and 21
(44.7%) females, aged between 21 and 83 (mean = 48.88, SD = 16.10), were referred. It
is departmental policy to attribute either one or two broad formulations, using the
Effective Purchasing Providing in the Community (EEPIC) system22, to each patient
from their referral letters. This system describes problems or disorders in psychological
terms that relate closely to definitions within DSM IV23. Forty-one patients had one
EPPIC code, 17 had two (total 58). Information for one patient was missing. Using this
system, it appears that the most common reason for referral was difficulties adjusting to
illness/disability (Table 2). Emotional problems, psychobiological functioning (e.g.
pain) and cognitive functioning were also common reasons for referral.
INSERT TABLE 2 HERE
Information was gathered about treatment offered and/or received. The service operates
an opt in system whereby patients are approached as they reach the top of the waiting
list and asked if they still wish an appointment. There was a good up-take rate for this
service with 76.3% of patients attending their first appointment (Table 3). Patients
waited between two and 22 weeks for an appointment (mean = 10.29, SD = 5.22). The
first appointment was conducted whilst six (15.7%) were in-patients. The remaining
thirty-two (84.3%) were seen, or offered an appointment, in the psychology department
on an outpatient basis.
INSERT TABLE 3 HERE
I. Awareness of the service (PART 1 of questionnaire)
Of the sixty-two Consultants identified, forty-seven replied to the questionnaire (a
response rate of 75.8%). With the exception of Oral Surgery at least reply one was
received from each department. However, thirteen were returned without appropriate
data or left blank.
The remaining 34 questionnaires were either fully or mostly complete. Fifteen
Consultants (44.4%) were previously aware of the Clinical Psychology service, of
which ten had made a referral. Thus, the majority (66.6%) of those who were aware of
the service had made a referral.
II. Satisfaction with service
Referrers were generally positive about the service, with only two out of ten responding
that they were dissatisfied. However, although all were satisfied with communication
9
between themselves and the service, seven out of ten responded that they were
dissatisfied with the length of time patients had to wait to be seen (Table 4).
INSERT TABLE 4 HERE
Referrers were also positive about the type of service they had received. They perceived
benefits to their patients and reported that it was likely that they would continue to make
referrals (Table 5). Although two Consultants felt that they had not received the type of
service they wanted they reported that the contact had been beneficial to their patient
and that they would refer again in the future.
INSERT TABLE 5 HERE
Consultants were asked if there were any aspects of the service that they would like
changed. Only two did so, both indicating their desire to have a shorter waiting time
(Appendix 1.3).
III. Perception of usefulness (PART 2 of questionnaire)
All Consultants were asked to rate their perception of the usefulness of a range of
psychological interventions. Response rates vary as some responders did not provide a
rating for every intervention. The majority of interventions were endorsed as being both
10
useful and applicable (Table 6). However, for most of the interventions a significant
minority felt that they needed to know more about the potential benefits.
INSERT TABLE 6 HERE
Comparisons were made between referrers and non-referrers regarding the perception of
usefulness of each intervention. Chi-squared analysis was conducted but no significant
differences were found between the two groups (Appendix 1.4). Visual inspection of the
results reveals that in general the referrers rated the interventions as more useful than the
non-referrers, however there was little difference between the two groups (Figure 1).
These results suggest that lack of awareness rather than perception of usefulness may be
a more important factor influencing referral patterns to date.
INSERT FIGURE 1 HERE
IV. In-patient services
Thirty-three responses were given in response to the question of whether the service is
only of use if patients can be seen during their medical admission. The majority (69.7%)
of responders indicated that the service remains useful even if the patient cannot be seen
whilst still in hospital.
11
V. Provision of further information
In respect to provision of further information, thirty-two responses were analysed.
Twenty-five Consultants (78.1%) indicated that they would appreciate further
information about the service, however, it appeared that there was little consensus over
the best way to provide this. Similar numbers of Consultants indicated that they would
appreciate either formal or informal presentations. Moreover, whilst some requested
only written information a similar number requested more detailed case discussion
(Table 7).
INSERT TABLE 7 HERE
Consultants were asked for any other comments. In general comments involved a
request for further information and/or input from the service but one Consultant
expressed concerns about his perceived difficulty of obtaining an urgent appointment
(Appendix 1.5).
12
Discussion
Given the many demands on the Consultants' time, the response rate to the postal
questionnaire compares favourably to previous research19. Responses indicate that, in
general, the level and format of service provision is being well received. If there is a
response bias it is small, as the majority of actual referrers replied to the survey.
Consultants were, however, notably dissatisfied with the waiting list. In part, this may
reflect the nature of the reason for referral. A two-month wait may not be a problem if
the patient's difficulty is long-standing, however if it were an acute event then this delay
in responding would be unsatisfactory. The potential length of the wait may then be
deterring some Consultants from making a referral, although psychological input could
improve patient care. Nevertheless, given the current limits on the service it is
encouraging to note that the majority of Consultants indicated that the service is still of
value even if the patient can not be seen as an in-patient.
In the first nineteen months just under the proposed number of referrals (42/47) were
received from a range of different medical specialities within the hospital. Acceptance
of five referrals from other sources outside of the local hospital makes up the quota.
Results indicate that if Consultants are aware of the availability of the service they will
refer, even if only occasionally. It is therefore perhaps unfortunate, but not surprising
given the referral pattern, that over half the Consultants who responded to the survey
were unaware of the service before this contact. This is disappointing given the service
Psychologist’s attempts at publicising it. A future target may be to explore different
methods of increasing awareness of the service, thereby increasing both the number and
diversity of referrals. However, given that the service is already meeting its patient
number targets, it may not be possible to effectively accommodate this increase whilst
maintaining the current level of satisfaction.
13
Approximately one quarter of patients referred either did not opt in to treatment or failed
to attend their first appointment. This rate is no higher than the general departmental
opt-in rate. However, some patients who did attend the service commented that they
were unaware of the referral by their doctor. Improved communication between the
doctors and their patients regarding the reason for referral and the benefits that they may
gain from attending a Psychologist may facilitate an increased up-take rate of the
service. Nevertheless, research indicates that many patients do not understand or
remember what they are told during a medical consultation24, therefore, the provision of
written information for patients about the service may also be required.
The results of this survey indicate a very positive view of potential usefulness of a wide
range of interventions offered by Clinical Psychologists. There was considerable
support for interventions associated with emotional problems, pain management, and
adjustment to illness/disability. These are currently the most common reasons for
referral. Consultants may have leamt through experience that these interventions are
suitable for their patients. However, both those who had referred and those who had not
were very positive, so it is difficult to assess what referrers have actually learned from
the service. Moreover, there was also considerable support for interventions not used to
date e.g. counselling for terminally ill patients. Staff support was also seen as important,
as was staff education/training, but the service does not currently provide this.
Very few areas received negative ratings, although the respondents were clearly
undecided about the possible benefits of neuropsychological assessment, psychological
input to rehabilitation and psychological preparation for medical/surgical intervention.
Given the quantity of research evidence indicating that psychological preparation for
surgery can result in better outcomes25 it is surprising that the latter was rated as the
14
least useful. However, this appears to reflect a lack of knowledge about its possible
benefits rather than a dismissal of its usefulness per se. It possibly also indicates that
surgical specialities require a more on-call type of service.
Overall, the number of Consultants who indicated that they would require more
information before being able to make a judgement about usefulness was noteworthy,
ranging from 16.7% to 51.9% over the various interventions. Thus, it appears that there
is scope for providing Consultants with more detailed information about the benefits of
psychological interventions either through written material and/or by meeting with
Consultants on a departmental or individual basis. In fact, the majority of Consultants
indicated that they would welcome further information and/or contact. In future, this
may facilitate an increased understanding of the potential benefits of the service to both
patients and staff.
Conclusion
Although there appears to be a growing appreciation of the possible contributions of
Clinical Psychology to health care by medical Consultants, it appears that the
Psychologists involved must regularly review and audit their services in order to
promote them. However, they must also have the resources available to them to be able
to deal effectively with the number of referrals they could receive if their efforts are
successful. Moreover, in order to meet the individual demands of different medical
departments, some specialisation may be required by Psychologists working within this
field.
15
Service recommendations
1. To explore different methods of promoting awareness of the service within the
hospital, this may be achieved by providing Consultants with more detailed
information about the service, as they have requested.
2. To examine the feasibility of providing staff training and support within the hospital.
16
References
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18
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19
Table 1.Number (percentage) o f department from which referrals were received.
Department Number %
Medicine 17 40.5
Medicine for the Elderly 8 19.0
Orthopaedic Surgery 8 19.0
General Surgery 3 7.1
Dermatology 2 4.8
Gynaecology 1 2.4
Neurology 1 2.4
Rheumatology 1 2.4
Urology 1 2.4
20
Table 2. Number (percentage) o f referral EPPIC Broad Formulations
Number %
Adjustment of physical illness/disability 21 36.2
Emotional problems (anxiety &/or depression) 14 24.1
Psychobiological e.g. pain management 10 17.2
Cognitive functioning / psychometric testing 7 12.1
Behaviour/Conduct 2 3.4
Social Adjustment / relationships 1 1.7
Habit/dependency 1 1.7
Sexual Functioning 1 1.7
Bereavement 1 1.7
21
Table 3. Number (percentage) o f patients categorised by treatment offered or received
(excluding 4 on the waiting list)
Treatment offered or received Number %
Patient decided not to opt in to the service
Patient decided to opt in to the service
4 10.5
Still in treatment 4 10.5
Did not attend or cancelled first appointment 5 13.2
Discharged following assessment and/or treatment 21 55.3
Patient died whilst in treatment 4 10.5
22
Table 4. Number o f responses by question and category (sample number in brackets).
Very
satisfied
Mostly
satisfied
Indifferent or
mildly dissatisfied
Quite
dissatisfied
General Satisfaction (n=10) 3 5 1 1
Waiting list (n=10) 0 3 3 4
Communication (n=10) 4 6 0 0
23
Table 5. Number o f responses by question and category (sample number in brackets).
Yes,
definitely
Yes, I think
so
No, I don’t
think so
No, definitely
not
Service wanted (n=9) 3 4 1 1
Beneficial to patient (n=9) 3 6 0 0
Future referral (n=9) 6 3 0 0
24
Table 6. Percentage o f respondents rating intervention as useful, not useful, need more
information and not applicable (validpercent in brackets).
Yes No Need to know
more
n/a
Psychological help for emotional
problems (n=33)
69.7 (76.7) 6.1 (6.7) 15.2 (16.7) 9.1
Pain management (n=34) 64.7 (71.0) 0(0) 26.5 (29.0) 8.8
Counselling relatives of the dying (n=32) 62.5 (76.9) 3.1 (3.8) 15.6(19.3) 18.8
Staff education/training (n=31) 61.3 (70.4) 0(0) 25.8 (29.6) 12.9
Adjustment to illness/disability (n=33) 60.6 (74.1) 3.0 (3.7) 18.2 (22.2) 18.2
Counselling the dying (n=33) 60.6 (76.9) 3.0 (3.8) 15.2(19.2) 21.2
Staff support (n=30) 60.0 (69.2) 3.3 (3.8) 23.3 (26.9) 13.3
Counselling relatives for adjustment
(n=32)
56.3 (69.2) 6.3 (7.7) 18.8 (23.1) 18.8
Adherence to treatment (n=30) 50.0 (65.2) 3.3 (4.3) 23.3 (30.4) 23.3
Eating and smoking disorders (n=32) 50.0 (66.7) 3.1 (4.1) 21.9 (29.2) 25.0
PTSD (n=31) 45.2 (63.6) 6.5 (9.1) 19.4 (27.3) 29.0
Neuropsychological assessment (n=32) 37.5 (52.2) 3.1 (4.3) 31.3 (43.5) 28.1
Rehabilitation (n=31) 38.7 (52.2) 9.7(13.0) 25.8 (34.8) 25.8
Psychological preparation for
medical/surgical intervention (n=34)
26.5 (33.3) 11.8(14.8) 41.2 (51.9) 20.6
* valid percent = percentage calculated after removing not applicable responses.
25
Table 7. First and second choices for provision offurther information.
Frequency of response
1st Choice 2nd Choice*
Formal presentation to group of staff 7 5
Written information 7 5
Informal visit to their department 5 4
Case discussion 6 4
* Not all Consultants made use of the second choice option
26
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CHAPTER 2: MAJOR RESEARCH PROJECT LITERATURE
REVIEW
Treatment adherence in adults with Cystic Fibrosis: a discussion of
contemporary research findings.
Laura E.L. Pettigrew
University Department o f Psychological Medicine
Gartnavel Royal Hospital
1055 Great Western Road, Glasgow, G12 OXH
Prepared in accordance with guidelines for submission to Health Psychology (Appendix
2.1)
Word Count 3934
28
Abstract
Advances in the care of patients with Cystic Fibrosis have led to the majority surviving
into adulthood. However, the daily treatment routine involves a complex, time-
consuming and expensive range of treatments and studies have consistently revealed
variable rates of adherence. Non-adherence has a number of negative implications for
both the individual and healthcare providers. Researchers in this field hope to be able to
both identify patients at risk of non-adherence and to develop strategies aimed at
improving adherence. A variety of demographic, clinical and psychological variables
have been explored as potential predictors of non-adherence, but the literature in the
adult population is limited. Future research will explore how these factors interact and
impact upon the individual's ability to self-manage their illness.
Word count 121
Key phrases: Cystic Fibrosis, Adherence, Psychological Morbidity, Self-efficacy
29
Introduction
Cystic Fibrosis (CF) is the most common fatal hereditary disease in the Caucasian
population; 4-5% carry the recessive gene and 1:2000 live births are affected (Lewiston,
1985; Mathews & Drotar, 1984). Whilst once considered a disease of childhood,
advances in the management and care of patients with CF has led to the majority of
patients surviving into adulthood (Elbom, 1998). The current median survival for
patients with CF is approximately 30 years, compared with 5-6 years in the 1950’s
(Elbom, 1991). Understanding the psychological, social and vocational functioning of
these adults is a new area of both clinical interest and research effort. Research in other
chronic illness populations has revealed the important role that psychological factors
can play in mediating health outcomes (Baum, Newman, Weinman, West, & McManus,
1997) and it is expected that as the literature in this field grows, similar findings will
also be reported. The focus of this review is the examination of psychological factors
that may influence treatment adherence in adult CF patients.
The self-management of Cystic Fibrosis
CF is a complex autosomal recessive disease affecting the exocrine glands in several
major organ systems, including respiratory, digestive, and reproductive. The course of
CF is extremely variable with respect to both the organs that are involved and its clinical
severity. People with CF range from being asymptomatic with no outward appearance
of ill health to having symptoms of chronic cough productive of large amounts of
sputum, wheezing, dysponea and limited exercise tolerance. Patients with CF generally
experience a slow deterioration in pulmonary function over time, but there is much
variability within each person as well as between people with CF. Some of this
variability may be attributable to the specific gene mutations (Kerem, Reisman, Corey,
Canny, & Levison, 1990), but environmental factors and treatment strategies also play a
30
large role. Assessment of the efficacy and effectiveness of any therapy in CF takes a
long time because of this slow and variable progression.
Although there have been significant advances in understanding the genetic and basic
defect in CF patients, cure is still not available (Collins, 1992). Therefore, the treatment
of CF is actually the prevention and treatment of its complications. In the lungs,
abnormal mucus production impedes the normal clearing mechanism. The mucus
accumulates in the bronchi and bronchioles, leading to obstruction and infection from an
early age (Oppenheimer & Easterly, 1995). Over time this process permanently
damages the lungs and results in respiratory insufficiency. For example, cardio
respiratory factors were responsible for 78.1% of deaths in CF patients in North
America in 1991 (FitzSimmons, 1993). General measures to minimise the extent and
effect of chest infection include early diagnosis, good nutrition, minimising exposure to
colds and acute viral respiratory infections, adequate immunisation, avoidance of
smoking and "second hand" smoking. In addition, chest physiotherapy is an integral part
of the management of cystic fibrosis. It aims to reduce airway obstruction by improving
the clearance of secretions, to reduce the severity of the infection by clearing infected
material and the maintenance of optimal respiratory function and exercise tolerance
(Moss, 1995; Ramsey, 1996, Webber & Pryer, 2000). Exercise has also been advocated
as an alternative or supplement to physiotherapy as it may loosen mucus from the lungs
(Orenstein, Henke, & Chemy, 1983; Webber & Dodd, 2000). CF patients are also
susceptible to bacterial infection, which is typically combated by antibiotic treatment
administered orally, intravenously or through use of aerosols. Antibiotics can be
prescribed prophylactically or following detection of infection (Hodson, 2000).
31
The secretion of digestive juice from the pancreas is also severely reduced in most CF
patients from an early age and, unless treated with pancreatic extract, the digestion and
absorption of food is severely impaired (Borowitz, 1994). Inadequate absorption of food
from the bowel will lead to unpleasant digestive symptoms, malnutrition, poor growth
and specific deficiencies of fat soluble vitamins A, D and E (Littlewood & Wolfe,
1994). There is evidence that well nourished patients have a better prognosis (Corey,
McLaughlin, Williams, & Levison, 1988; Elbom & Bell, 1996). It is, therefore,
essential that CF patients have an adequate energy intake, effective pancreatic
supplements and a supplement of fat-soluble vitamins (Littlewood & MacDonald, 1987;
Littlewood & Wolfe, 1994).
The negative implications o f poor adherence
Good self-management involves the individual adjusting their daily routine and
resources around their medical treatments. Patients must also routinely monitor their
symptoms and interpret changes as a basis for modifying the frequency and type of
therapy. Finally, they must know how to contact and communicate effectively with their
health care providers regarding changes in symptoms or conditions. To maintain good
self-management is a challenge for most patients as they attempt to balance their social
and medical needs. Given these demands, some degree of non-adherence is
unsurprising. In particular, adherence to chest physiotherapy, diet and exercise
prescriptions are often cited as problematic (Abbott, Dodd, Bilton, & Webb, 1994;
FitzSimmons, 1993; Shepherd, Hovel, & Harwood, 1990; Stark, Miller, Plienis, &
Drabman, 1987).
Poor adherence over a sustained period of time has a number of negative implications.
For the patient it may lead to increased infective exacerbations and faster disease
32
progression; possibly causing lost time in education or work and further distress about
health status (Patterson, Budd, Goetz, & Warick, 1993). For the health care provider it
can result in wasted resources e.g. unused medications, an increased demand in
outpatient visits, and inpatient stays (Abbott & Gee, 1998). In addition, non-adherence
may interfere with research trials monitoring the effectiveness of new forms of
treatment. It is therefore a major concern for not only the patient and their family, but
also the medical team in charge of their care, National Health Service Trust purchasers
and pharmaceutical companies.
Factors influencing adherence
Non-adherence to medical treatments is not a problem unique to CF. It is estimated that
rates of non-adherence vary from a low of 15% for short-term regimens taken in
episodes of acute illness to as high as 93% for longer-term regimens requiring changes
in life-style (Kaplan & Simon, 1990). Moreover, research suggests that many patients
fail to either correctly follow medication instructions and or to complete prescribed
courses of treatment, potentially endangering their health and wasting health resources
(Haynes, 1982). In order to address the negative implications of non-adherence
investigators have attempted to both identify patients at risk of non-adherence and to
develop strategies aimed at improving adherence. There is an extensive research
literature examining the value of range of factors in predicting non-adherence (Conner
& Norman, 1996; Edelmann, 2000). Early research tended to be atheoretical and
focused mainly on examining the role of patient characteristics, clinical factors, provider
characteristics and the interaction between patients and health care staff (Table 1).
Searching for factors that identify the "non-adherent" patient is limited by findings that
demonstrate that patients are inconsistent in their adherence behaviour; within the same
individual adherence rates often vary between treatment types and over time. In recent
33
years research has become more theory driven and models of health behaviour e.g.
social cognition and self-regulatory models of illness have been applied to the
understanding of patients' adherence to treatment regimens (Conner & Norman, 1996).
Research using these models has broadened our understanding of the cognitive,
behavioural and emotional factors that may influence adherence and the dynamic way in
which these factors may interact. Findings have demonstrated that adherence may be
influenced by patients' beliefs about their illness, their treatment and/or their ability to
manage their health care. Therefore, at times, non-adherence can be viewed as the
intentional result of patients' decision making about their health rather than the
unintentional consequences of their personal characteristics, their health status, or the
health care that they have received.
As in other areas, investigators hope to be able to identify factors that place CF patients
at risk of non-adherence and to develop strategies aimed at improving adherence.
Investigators have attempted to identify high-risk groups within the CF population by
relating both demographic variables e.g. age, gender, socio-economic status etc. and
clinical variables e.g. illness severity, age at diagnosis etc., to adherence. In addition,
they have attempted to link variables such as psychological morbidity and level of
knowledge to adherence in an attempt to produce a theoretical basis for designing
interventions. This latter area of research has gained little attention to date in the adult
population, however, based on research findings a number of interventions have been
designed and applied successfully in the paediatric population (Maxwell & Stone, 1992;
Stark et al., 1987; Steinberg, Taylor, Lemming & Simmons, 1992).
34
Demographic & Clinical predictors of non-adherence
Most studies of adults have failed to identify differences in adherence on the basis of
demographic factors such as employment and socio-economic status (Abbott et al.,
1994). In contrast, there is evidence to suggest that both age and gender are influential.
Consistent with findings in other chronic illness groups (e.g. Korsch, Fine, & Negrete,
1978) adherence has been shown to be negatively affected during adolescence with
female patients reported to be less adherent than their male counterparts (Czajkowski &
Koocher, 1986; Ricker, Delamater, & Hsu, 1998). Moreover, there is some evidence to
suggest that following adolescence adherence will improve again (Hamlett, Murphy,
Haynes, & Doershuk, 1996). However, other studies have failed to confirm these
findings (Abbott et al., 1994; Abbott & Gee, 1998) suggesting that there is not a
straightforward relationship between demographic factors and treatment adherence.
Similarly, results from studies examining the influence of disease severity on adherence
have been equivocal. Whilst some have reported that more severely ill patients are less
likely to be adherent (Abbott, Dodd, & Webb, 1995; Gudas, Koocher, & Wypij, 1991),
others have failed to confirm this finding (Abbott et al, 1994; Abbott, Dodd & Webb,
1996; Conway, Pond, Hamnett & Watson, 1996). Research in other chronic illness
groups (Hartmen & Becker, 1978; Kirscht & Rosenstock, 1977) suggests that it is the
perception of disease severity, not the actual disease severity, which predicts treatment
adherence. This matter deserves further consideration in the adult CF population
(Sawyer, Rosier, Phelan & Bowes, 1995).
35
Psychological morbidity and adherence
In recent years, investigators have devoted considerable attention to the role that
psychological variables play in mediating self-management and health status in chronic
illness patients. It is likely that the relationship between these variables is complex, and
it is difficult to establish causality in the absence of longitudinal studies. However, in
general, investigators have hypothesised that psychological variables have an indirect
impact on health status through their impact on self-management behaviours including
adherence to medical treatments (Newburgh, Simpkins, & Maurer, 1985; Peyrot, 1985;
Schafer, Glasgow, McCaul, & Dreher, 1983). This hypothesised relationship is based on
two assumptions: adherence directly influences health status, and psychological
variables have a direct effect on adherence.
The bulk of literature in this area relates to metabolic control with diabetes patients.
Studies have revealed that emotional difficulties e.g. anxiety, depression, low self
esteem, can have a negative impact of the individual's ability to manage their illness,
which may lead to non-adherence (Littlefield, Craven, Rodin, Danenon, Murray, &
Rydall, 1991; Warren & Hixenbaugh, 1996) and poor metabolic control (Mazze,
Lucido, & Shamoon, 1994). In particular, research suggests that female patients tend to
be at a greater risk of developing eating disorders and having poor metabolic control in
their adolescent years in comparison with their male counterparts (Hamburg & Inoff,
1982; Kaar, Akerblom, Huttunen, Knip, & Sakkinen, 1984; Steel, Young, Llyod, &
McIntyre, 1987). Research in other chronic illness populations is less extensive,
however, similar findings have been reported. For example, Bosley and colleagues
(Bosley, Fosbury, & Cochrane, 1995) reported a link between depressive
symptomatology and poor adherence in adult patients with asthma. In addition, studies
have reported a link between poor self-esteem and non-adherence in renal transplant
36
patients (Korsch et al., 1978), adolescents with rheumatoid arthritis (Litt, Cuskey, &
Rosenburg, 1982) and individuals with epilepsy (Friedman, Litt, & King, 1986).
CF, like other chronic diseases, can have a major impact on the individual's
psychosocial status. The extraordinary effort required for self-care as well as the ever
present possibility of developing further complications may present psychological and
social stresses. There is a small, but growing literature, examining the psychological
functioning of adult CF patients. In general, investigators have concluded that CF
patients are a well adjusted group (Anderson, Flume, & Hardy, 2001; Blair, Cull, &
Freeman, 1994; De Jong, Kaptein, & VanderSchans, 1997). However, some studies
have reported that adult patients frequently experience emotional difficulties, eating
disorders and social isolation (Boyle, di Sant'Agnese, & Sack, 1976; Sawyer et al.,
1995; Strauss & Wellish, 1981). It is possible that the inconsistent findings reported are
a result of the variety of methodologies used in this research. Primarily, a variety of
diagnostic and self-report measures have been applied, not all of which are standardised
for use in chronic illness groups. Secondly, some studies have failed to use control
groups either of well subjects or of families coping with other illnesses. Finally, even
when control groups have been employed they have not always been well matched to
the CF group (e.g. Blair et al., 1994). It is also possible that, given the rapidly improving
prognosis of this disease, older studies may not generalise to today's adult CF patients.
However, it remains possible that some patients will experience psychological
difficulties, either related to their illness or other life events. In addition, there is some
evidence to suggest that adolescent CF patients are at increased risk of developing
psychological difficulties (Boyle et al., 1976; Coffman et al., 1984; Sinnema, Bonarius,
Von der Laag, & Stoop, 1988). Moreover, that adolescent females may experience more
37
emotional difficulties than their male counterparts (Bywater, 1981; Coffman et al.,
1984; Sawyer et al., 1995). Therefore, it is important to understand the possible impact
psychological difficulties may have on adherence and, potentially, on health status.
Unfortunately, in comparison to other chronic illness groups, few studies have been
published to date examining the impact of psychological adjustment on adherence in
adult CF patients. In contrast, a number of studies have examined how the psychological
status of parents of children with CF may impact on their ability to manage their
children's illness (e.g. Geiss, Hobbs, Hannersley-Maercklein, Kramer, & Henley, 1992).
In one of the few studies using older patients Ricker et al. (1998) revealed that self
esteem predicted adherence, but this study was limited by its small sample size. Thus, it
appears that this is an area that requires further research. Given that research indicates
that adolescent patients may be at risk of both poor adherence and increased levels of
psychological morbidity there are a number of areas that merit particular attention when
examining the relationship between psychological factors, adherence and health status.
Firstly, an adolescent's desire to conform to their peer group and to be independent of
their parents may lead them to deny their illness and/ or to neglect their medical regimen
(Heisler & Friedman, 1981; Sawyer et al., 1995; Tatersall & Lowe, 1981). Secondly,
concerns about body image during adolescence may hinder good adherence. Research in
diabetes has indicated that females' concerns about body image can interfere with their
use of medication to control blood sugar levels (Polonsky, 1994). It is possible that
similar concerns may lead female CF patients to be less adherent to their prescribed
pancreatic enzyme medication and recommended calorific intake (Smrekar,
Ellenmunter, Rothner, & Bonan, 1992). For example, it has been noted that young
females with CF are often quite comfortable with a low body mass index because their
38
shape and size conforms with their perception of normal body image for their sex
(Elbom, 1998). Non-adherence in this area has potentially very negative implications as
nutritional status is related to the clinical course for patients with CF (Elbom & Bell,
1996; Kerem et al., 1992). Finally, the chronic and incurable nature of CF may become
more salient and discouraging during adolescence and the impact this has on adherence
requires consideration.
Knowledge, Self-efficacy and adherence
Koocher, McGrath and Gudas (1990) hypothesised that inadequate knowledge due to
either a lack of information or misinterpretation of information provided may influence
treatment adherence. This hypothesis has good face validity: the management of CF
requires extensive information about the condition and the skills required to monitor and
manage its symptoms e.g. how chest physiotherapy should be performed, when
enzymes should be taken etc. A number of studies have examined both patients' and
caregivers' knowledge about CF and demonstrated that, in general, they are a well
informed population (Conway, Pond, Hamnett, & Watson, 1996; Hames, Beesley, &
Nelson, 1991; Henley & Hill, 1990; Nolan, Desmond, Herlich, & Hardy, 1986).
Researchers have also attempted to examine whether knowledge is predictive of
adherence. Unfortunately, as with much of the research in this field, findings have been
equivocal. Whilst some studies have reported a positive relationship between knowledge
and adherence (Czajkowski & Koocher, 1986; Giess et al., 1992), others have failed to
find a significant relationship between these variables (Conway et al., 1996).
This has led some investigators to conclude that whilst patients should obviously be
made aware of the various aspects and consequences of their illness, education alone
will not be effective in improving adherence (Parcel, Swank, Mariotto, Bartholomew,
39
Czyzowski, Sockrider, & Selheimer, 1994). Moreover, it has been proposed that efforts
should be made to investigate other factors that may be important determinants of
adherence. In particular, the role that self-efficacy and outcome expectations may play
has been highlighted as an area of future research. Although the demanding nature of the
CF treatment regimen is well recognised, little attention has been paid to patients'
beliefs about their ability to perform the complex tasks necessary to be adherent, and the
benefit of doing so. According to social cognitive theory (Bandura, 1986), individuals
with knowledge of what to do and how to do it (behavioural capability), confidence in
being able to perform the behaviours (self-efficacy) and belief that their behaviour will
result in some favourable outcome (outcome expectation) will be more likely to perform
the specified behaviour.
As with other areas of interest, research examining the relationship between adherence
and self-efficacy has been limited to paediatric samples (Czajkowski & Koocher, 1986;
Ricker et al., 1998). For example, Parcel et al. (1994) examined the role of self-efficacy
in parents' management of their child's medical regime. Controlling for the effects of all
other variables, including demographic, they concluded that self-efficacy was the most
important educational factor predicting self-management behaviour for monitoring and
treating respiratory problems. Therefore, because it is possible to enhance a person's
self-efficacy in order to improve adherence (Kaplan, Atkins, & Reinsch, 1984) this is an
area of potential future research in the adult CF population.
Research limitations
The research literature concerned with the examination of predictors of treatment
adherence in adults with CF is small in comparison to other chronic illness groups.
Moreover, it is unfortunate that studies to date have often yielded inconclusive or
40
contradictory results. It has been suggested that these inconsistencies reflect the variety
of methodologies employed to assess adherence (Abbott & Gee, 1998). The assessment
of adherence is a complex task, but little empirical attention has been paid to the
development of standardised methods of assessment. Although direct measures of
medication adherence e.g. analyses of blood and urine samples, are more objective, they
are difficult and expensive to obtain. Therefore, studies have generally used indirect
methods e.g. diaries, self-report questionnaires and medical staff reports. Authors have
suggested that self-report measures are invalid as they can be biased by factors such as a
patient's desire to appear socially acceptable (Moise, Drotar, Doershuk, & Stem, 1987),
and it has been suggested that they overestimate adherence by up to 20% (Haynes,
1982). Nonetheless this method has the advantage of being least expensive and valuable
to the extent that those who report non-adherence rarely lie (Litt & Cuskey, 1980). In
addition, it has been proposed that medical staff are also poor judges of patient
adherence (Conway et al., 1996; Litt & Cuskey, 1980). For example, Roth (1987)
reported that doctors overestimated patients' intake of medication by 50%. There are
various reasons for their possible overestimation: they may believe that patients
automatically follow their recommendations, or simply lack reliable information about
their patients' behaviour.
Insensitive scoring systems have also been problematic in the assessment of adherence.
Some studies have assessed several treatment components but then combined data to
provide an overall adherence score (e.g. Czajkowski & Koocher, 1986; Patterson, 1985;
Strauss & Wellisch, 1981). However, the validity of a combined score may be poor
because patients are often adherent to one aspect of their treatment but not to others
(Abbott et al., 1994; Conway et al., 1996; Passero, Remor, & Salomon, 1981;
Pownceby, 1996).
41
In addition to the difficulty of accurately assessing adherence, many published studies
appear to lack statistical power or are over-inclusive in terms of age range. For example,
Czajkowski and Koocher (1986) combined school aged children as young as thirteen
and patients in their early twenties, when examining psychological functioning in
'adolescent' CF patients. Moreover, children (some with parental reporting) and adults
have been combined in data analyses (Meyers, Dolan, & Mueller, 1975; Passero et al.,
1981; Patterson, 1985) yet reports of patient and parent are not necessarily similar, and
neither are reports of children and adults. These problems probably reflect the
difficulties in recruiting adequate sample sizes from within one medical centre.
Unfortunately, this means that extrapolations regarding particular findings may be
unwise. Similarly, most studies have been cross-sectional and it would be useful to have
more longitudinal data so that adaptation to CF can be explored through developmental
transitions.
A self-selection process may also be operating, with the more vulnerable or maladjusted
patients not volunteering to participate in research studies. In addition, patients
participating in research studies examining treatment adherence may either consciously
or unconsciously try to portray themselves in the best possible light for fear of being
criticised by medical staff. Therefore, when possible, research should be conducted by
individuals who are independent of the medical team responsible for the patient care.
Finally, a major problem that arrives from gaining samples from medical centres is that
health professionals may be reluctant to either engage in research or to allow access to
their patient group. This reluctance may arise from genuine concerns regarding patients'
rights to privacy, demands being placed on unwell patients and/or the quality of the
therapeutic relationship between staff and patients being damaged. For example,
42
medical staff may be concerned that patients will find the experience so aversive that
they fail to attend subsequent appointments. Staff may also be concerned that the
outcome of any research may reflect negatively on their practice. In addition, staff may
be reluctant for researchers to 'take up' patients' time during busy clinic visits when they
may have to see all members of a team (doctor, physiotherapist, nurse, dietician,
psychologist) and under-go routine health checks. As with the other methodological
limitations already noted, these factors highlight the difficulty of conducting good
theoretically driven investigations (which may require large sample sizes and a wide
range of lengthy and/or possibly intrusive measures) in hospital settings where the
primary focus should always be the rights and needs of the patient.
Conclusion
Given the complexity, demanding nature and expense of treatment, combined with the
negative effects of non-adherence, research evaluating self-management in CF has been
surprisingly limited in its scope and sophistication. Understandably, most studies to date
have concentrated on examining correlates of regimen adherence in children with CF.
However, as the life expectancy of the CF population increases it is important to
understand factors that may influence adherence in this condition. To date, findings
suggest that some patients, in particular adolescent females, are at risk of experiencing
psychological difficulties. Future research will determine how this impacts upon the
self-management of their illness and health status.
43
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54
Table 1. A selection of factors that have been examined as potential predictors of
treatment adherence.
• Patient Characteristics
Demographic factors e.g. age, gender, ethnicity, level of education, socio-economic
status, marital status, living situation etc.
Personality traits
Past behaviour in relation to treatment regimens
Level of social support and family functioning
Knowledge about disease and treatment regimen
Understanding and recall of treatment regimen information
Negative beliefs about medical treatments
Satisfaction with health care
• Clinical (disease/treatment) variables
Illness severity
Length of time since diagnosis
Complexity and type of treatment regimen (e.g. medication Vs exercise)
Side effects of treatment
Duration of treatment regimen
• Provider characteristics and interaction between patients and providers
Communication style of health care staff and clarity of information provided
Empathy and understanding of health care staff
Health care staffs' satisfaction with in their job
Frequency, length and accessibility of consultations
• Factors associated with models of health behaviour
Beliefs about illness e.g. symptoms, severity, cause, prognosis etc.
Beliefs about the benefits of treatment adherence
Beliefs about barriers to treatment adherence
Beliefs about the views of significant others (e.g. family, friends, doctors etc.)
Emotional adjustment
Self-efficacy and outcome expectancies
Coping style
Locus of control
(Litt & Cuskey, 1980; Conner & Norman, 1996; Edelmann, 2000)
55
CHAPTER 3: MAJOR RESEARCH PROJECT PROPOSAL
Treatment adherence in adults with Cystic Fibrosis: an exploratory study
of the influence of self-efficacy, self-esteem and psychological morbidity
Laura E.L. Pettigrew
University Department o f Psychological Medicine
Gartnavel Royal Hospital
1055 Great Western Road, Glasgow, G12 OXH
Prepared in accordance with D.Clin.Psy Guidelines (Appendix 3.1)
Word Count 2452
56
Applicant
Ms Laura Pettigrew
Trainee Clinical Psychologist
Department of Psychological Medicine
Gartnavel Royal Hospital
Glasgow, G12 OXH
Supervisors
Dr Sarah Wilson
Senior Lecturer in Health Psychology
Department of Psychological Medicine
Gartnavel Royal Hospital
Glasgow, G12 OXH
Ms Julie Metcalfe
Clinical Tutor
Department of Psychological Medicine
Gartnavel Royal Hospital
Glasgow, G12 OXH
Title
Treatment adherence in adults with Cystic Fibrosis: an exploratory study of the
influence of self-efficacy, self-esteem and psychological morbidity.
Summary
The daily medical regime for patients with CF involves a complex and time-consuming
range of treatments. Poor adherence is a common problem within this population and is
a major concern for the various groups involved in patient care. There is a growing
literature on adherence within this population but to date only a few studies using
paediatric samples have examined the influence of psychological factors on treatment
adherence. Self-efficacy, along with self-esteem and psychological well-being, have
been shown to be predictors of adherence in other chronic illness patient groups and
57
research indicates that they may also be of importance within the adult CF population.
The objective of this study is to examine the inter-relationship between treatment
adherence, self-efficacy, self-esteem and psychological morbidity. A minimum of sixty-
six patients will be recruited from the West of Scotland Adult Cystic Fibrosis Centre
based in Gartnavel General Hospital. Participants will be asked to complete a set of
relevant questionnaires. Additional information will be obtained from patient records. It
is hoped that the findings of this study may be used to help identify individuals who are
at risk of having difficulty adhering to their medical regime as a result of psychological
factors.
Introduction
Cystic Fibrosis (CF) is the most common fatal hereditary disease in the Caucasian
population; 4-5% carry the recessive gene and 1:2000 live births are affected. It is a
chronic illness that affects multiple organ systems and ultimately results in premature
death. However, advances in the management and care of patients with CF have led to
the majority surviving into adulthood (Elborn, 1998). This improved survival rate has
been attributed to earlier diagnosis, multidisciplinary specialist care and more effective
methods of treatment.
Without a cure, medical treatment targets only the symptoms of the disease in order to
increase life span. The daily treatment routine involves a complex, time-consuming and
expensive range of treatments including physiotherapy; nebulised, oral and intravenous
drugs; exercise and nutritional supplements. Adherence to such a treatment while living
a busy school, work and social life is extremely difficult for most patients. In particular,
adherence to chest physiotherapy, diet and exercise prescriptions are often cited as
problematic. For example, whilst physiotherapy is crucial in preventing the onset of
58
pulmonary disease, which is responsible for 78% of CF deaths (FitzSimmons, 1993),
studies consistently reveal that approximately half of patients do not regularly adhere to
this form of treatment (Stark et a l, 1987; Shepherd et al., 1990; Abbott et al., 1994).
Non-adherence may not only cause accelerated disease, but also leads to wasted
resources, increased outpatient visits, and more admissions to hospital. In addition, non
adherence may interfere with research trials monitoring the effectiveness of new forms
of treatment. It is therefore a major concern for not only the patient and their family, but
also the medical team in charge of their care, National Health Service (NHS) Trust
purchasers and pharmaceutical companies.
It is hoped that research investigating the determinants of adherence will help identify
those at risk and be used to help design interventions for improving adherence.
Understandably, most studies to date have concentrated on examining correlates of
regimen adherence in children with CF. However, it is difficult to generalise findings to
the adult patients, as it is the parents, and not the children themselves, who are generally
responsible for implementing the medical recommendations. Based on research studies
conducted in other chronic illness groups, a number of factors have been identified as
potentially important predictors of non-adherence and have guided research to date.
Demographic factors
Research has suggested that during adolescence, rates of non-adherence increase (Gudas
et al., 1991; Ricker et al., 1998). Research also suggests that gender may influence
adherence during adolescence, with females reported to be less adherent than their male
counterparts (Czajkowski & Koocher, 1987). However, other studies have failed to
confirm these findings (Abbott et al., 1994), suggesting that there is not a
straightforward relationship between demographic factors and treatment adherence.
59
Clinical factors
Similarly, results from studies examining the influence of disease severity on adherence
have been equivocal. Whilst some have reported that more severely ill patients are less
likely to be adherent (Gudas et al., 1991; Abbott et al., 1995), others have failed to
confirm this finding (Conway et al., 1996; Abbott et al., 1994; Abbott et al., 1996).
Research in other chronic illness groups (Hartmen & Becker, 1978; Kirscht &
Rosenstock, 1977) suggests that it is the perception of disease severity, not the actual
disease severity that predicts treatment adherence. This matter deserves further
consideration in the adult CF population (Sawyer et al., 1995).
Psychological factors
Research in other chronic illness groups has suggested that psychological morbidity
influences treatment adherence (e.g. Richardson et al., 1988). Although research
indicates that in general adult CF patients are psychologically well adjusted (Blair et al.,
1994), it appears that particular groups within this population are more vulnerable to
psychological difficulties. Consistent with research in other chronic illness populations,
studies have revealed that adolescent patients report higher levels of psychological
morbidity and lower self-esteem when compared to their healthy peers (Seigel et al.,
1990; Sinnema et al., 1988). A few studies have also indicated that females experience
more difficulties than their male counterparts (Coffman et al., 1984; Cowen et al., 1984;
Simmons et al., 1985). It is therefore of interest to examine how psychological
morbidity affects treatment adherence in the adult CF population. In addition, it is of
interest to examine further how these psychological factors relate to demographic
factors.
60
Despite the demanding nature of the CF treatment regime, little attention has been paid
to patients' beliefs about their capability to perform the complex tasks necessary to be
adherent and the benefit of doing so. Perceived self-efficacy is thought to influence how
a person feels, thinks and acts (Bandura, 1977, 1994). Individuals with high-perceived
self-efficacy, it is proposed, will approach difficult tasks with a more competitive sense
toward mastery, invest more effort and persist longer than those with low self-efficacy.
In relation to a difficult medical regime, low self-efficacy beliefs may prevent the
patient from investing the required amount of effort and persistence needed to adhere
fully to all the recommended treatments.
Individually these psychological factors may all influence a patient’s ability to be
adherent to their medical regimen. It is also likely that they influence each other. A
perceived inability to be adherent along with negative feedback from carers and medical
staff may have a detrimental effect on the individual's self-esteem and psychological
well being. Conversely, decreased self-esteem and psychological morbidity may
maintain low self-efficacy.
As noted, the bulk of research to date has focused on examining correlates of adherence
in children with CF. However, as the life-expectancy of the CF population increases it is
important to understand non-adherence in both adolescents and adults. A review of the
current literature indicates that the above factors merit further investigation.
Research Aim & Hypotheses
The main aim of the present study is to examine how psychological factors (self-
efficacy, self-esteem and psychological morbidity) relate to treatment adherence in the
adult CF population. There is little published research investigating psychological
61
factors in this group but, as treatable causes of non-adherence, they have important
implications. A secondary aim is to examine how these psychological factors inter-relate
with demographic and clinical factors.
1) It is hypothesised that treatment adherence will be related to psychological factors. It
is expected that those who have higher self-esteem and lower levels of psychological
morbidity will be more adherent.
2) It is hypothesised that treatment adherence will be related to self-efficacy and
outcome expectations. It is expected that patients with low self-efficacy and
outcome expectation beliefs will be less adherent.
3) It is hypothesised that self-efficacy will be related to self-esteem and psychological
morbidity. It is expected that patients with low self-efficacy will have poorer self
esteem and greater psychological morbidity.
4) It is hypothesised that demographic factors will interact with treatment adherence
and psychological factors.
Plan of investigation
Subjects
Patients will be recruited from the West of Scotland Adult Cystic Fibrosis Centre based
in Gartnavel General Hospital. Participants should be aged > 16 and be responsible for
the management of their CF treatment.
62
Measures
Information will be obtained directly from patients, from the staff involved in their care
and from their medical records.
From patients - Basic demographic information and subjective reports of symptom
severity will be obtained from all patients. Two visual analogue scales will be used to
assess patients' subjective views on their health status. They will be asked to rate the
severity of their illness and perception of their health in comparison to other individuals
with CF (Appendix 3.2). A higher score on each reflects a perception of being in better
health. The scales were anchored in this manner in order to mirror FEV, ratings.
In addition, they will be asked to complete the following questionnaires.
1. The Manchester Adult Cystic Fibrosis Compliance Questionnaire (Abbott et al.,
1994). This questionnaire was developed to measure the rates of adherence, patients'
perception of adherence and reasons for non-adherence (Appendix 3.3). It assesses
adherence to physiotherapy, exercise, pancreatic enzymes and vitamin prescriptions.
2. The Hospital Anxiety and Depression Scale (Zigmond & Snaith, 1983). This scale is
a 14 item self-rating questionnaire designed to screen for anxiety and depression in
patients with physical illness. It contains depression and anxiety subscales scoring from
0-21, where a score of >11 indicates probable disorder.
3. The Rosenberg Self-Esteem Scale (Rosenberg, 1965, 1989). This is a ten-item scale
that assesses the strength of an individual's perceived self-worth. Possible scores range
from 0 to 10, where a score of >6 indicates low self-esteem.
63
4. The CF Self-efficacy Instrument for Adolescents (SE) and the Outcome Expectation
Instrument for CF (OE) (Bartholomew et al., 1993) will be used to examine patients
attitudes towards treatment self-management (Appendix 3.4 & 3.5). The first scale
assesses patients' feelings of self-efficacy i.e. their confidence in being able to manage
their illness. The scale contains 14 items that assess four factors of treatment
management (1) communication with the health care team, (2) acceptance and coping
(3) medical judgement and communication and (4) adherence to medical treatment.
Possible scores range from 0-70, with high scores indicating high treatment
management self-efficacy. The second scale assesses outcome expectations i.e. patients'
beliefs about the effect of self-management on disease process and quality of life. It
contains 8 items; Possible scores range from 0-40 with high scores indicating high
outcome expectations. The questions relating to medical treatment will be modified in
order to reflect the range of treatments under consideration.
These measures were chosen from a range of potential measures that have been used in
similar research. Measures that may have provided additional information relating to
patients' beliefs about their health status and coping stype include the Illness Perception
Questionnaire (Weinman et al, 1996), the Multi-dimensional Health Locus of Control
Scales (Wallston et al, 1978), and the Ways of Coping Scale (Lazarus & Folkman,
1984). Following discussion with the unit team these measures were excluded due to
concerns about the length of time it may take patients to participate in the study and
about the potential negative connotations created by the wording of some of the
questionnaire items.
From medical records - Information about the patients' prescribed medical regime will
be obtained in order to help validate the self-report measure of adherence. Basic
64
information regarding their previous medical history and treatment will be gathered as
general measures of illness severity. Forced expiratory volume (FEVj), a measure of
pulmonary function, will be taken as a specific measure of illness severity.
From health professionals - The medical professionals involved in the patients' care will
be asked to rate how adherent they believe the patients to be.
Design
The Manchester Compliance Questionnaire allows patients to be divided into two
groups based on their responses (fully adherent and partially adherent/non-adherent).
Previous studies have generally examined several different components of treatment e.g.
physiotherapy, diet, exercise, etc., and then combined the data to provide an overall
adherence score. Unfortunately, this type of score fails to recognise that patients
commonly adhere to one aspect of their treatment but not to others (Shepherd et al.,
1990; Abbott et al., 1994; Conway et al., 1996). Therefore, adherence to the individual
treatment components will be considered. In addition, it has been suggested that self-
report measures of adherence may have poor validity because they can be biased by
factors such as the patients' desire to appear socially acceptable. Therefore, although
patients will be divided into groups based on their self-report adherence, the validity of
this will be confirmed through comparison with the medical team’s reports/opinions.
The independent variables are self-efficacy, self-esteem and psychological morbidity
(anxiety and depression scores). Demographic factors e.g. age, gender, living situation,
marital status, and Clinical factors e.g. disease severity, symptom severity, frequency of
clinic visit, will also be considered.
65
It is expected that data analysis will involve an examination of the relationships between
the dependent and independent using a combination of descriptive and inferential
statistics.
A literature search revealed no published studies examining the relationship between
treatment adherence and self-esteem (as measured by the RSE) or psychological
morbidity (as measured by the HADS) in the adult CF patients. Therefore, similar
research conducted in children with CF and adults in other chronic illness populations
was used to guide the power calculation. Two relevant papers were identified. Littlefield
et al. (1991) examined psychological correlates of regimen adherence in adolescents
with diabetes. Results indicated that patients who reported lower adherence tended to
report lower self-efficacy (r = 0.57, p<0.001), lower self-esteem (r = 0.45, p<0.001 ) and
higher levels of depressive symptomatology (r = -0.51, p<0.001). Ricker et al. (1998),
when examining correlates of regimen adherence in children with CF, reported that
patients who scored more highly on a measure of self-worth were more adherent (r =
0.52, p <0.002). These studies indicate that there is a robust relationship between
psychological factors and regimen adherence in similar populations. Assuming a
significance level of 0.05 and a power of 0.80, sixty-six subjects would enable an effect
size of 0.40 to be detected between adherence and the psychological factors chosen
(calculated using G* POWER).
Settings and equipment
Questionnaire booklets for this study will be produced and compiled using materials and
equipment housed within the Department of Psychological Medicine. Data analysis will
also be conducted on computers based within the department.
66
A room will be required within the out-patient clinic of the CF unit to conduct the
interviews. The main researcher will also require access to a telephone.
Procedures
Patients who regularly attend out-patient clinic appointments will be provided with
information about the study (Appendix 3.6). They will be requested to contact the main
researcher should they wish to participate in the study. In addition to being able to
discuss the research project, they will be given an information sheet and a consent form
(Appendix 3.7). If the patient consents to participating in the study, they will be given
the option of either: -
a. completing the questionnaires whilst present in the clinic,
b. making an appointment with the researcher to complete the questionnaires with
them at a more convenient time e.g. at home, by telephone, during their next clinic
visit etc.
Data Analysis
Data from the questionnaires and other information gathered will be stored in a lockable
filing cabinet in the Department of Psychological Medicine. Data will be entered
anonymously onto a database. The Statistical Package for Social Science (SPSS for
Windows) will be used to analyse the data.
Descriptive statistics will initially be undertaken. It is expected that tests of difference
(t-tests), association (Chi-square, correlation, kappa statistic) and analysis of variance
will be used to explore the relationships between the dependent and independent
variables. Further inferential statistics may be conducted depending on the results of the
67
initial planned analysis. The qualitative data obtained from the interviews will also be
examined.
Practical Applications
Psychological interventions have been effectively used to improve adherence to
treatment in a number of chronic illness populations e.g. cancer, diabetes (Anderson &
Golden-Kreutz, 1997; Bradley, 1997). It is hoped that the results of this study will
reveal a relationship between psychological factors and treatment adherence in adult CF
patients. Thus, the findings could be used to help identify individuals who are at risk of
having difficulty adhering to their medical regime as a result of psychological factors.
Moreover, as potentially treatable factors of non-adherence, the findings may indicate an
increased role for Clinical and Health Psychology in the medical care of the adult CF
patient.
Timescale
The proposed starting date would be June 2000. The project would run for 14 months.
Ethical approval
A submission will be made to the appropriate ethics committee (Appendix 3.8).
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73
Amendment to proposal
The following statement explains the discrepancies between the major research project
proposal and the major research project paper.
Originally it had been planned to examine adherence to four components of the patients’
treatment regimen - physiotherapy, exercise, pancreatic enzymes and vitamins.
However, the physiotherapist attached to the unit advised that exercise is prescribed to
only a few patients who attend the clinic. Therefore, it was decided not to analyse the
data relating to exercise as part of the write-up of this paper.
The planned statistical analysis was altered following consultation with Dr James
Currall (medical statistician). ANOVA was not used as the number of potential
variables involved in the analysis would not have allowed for an accurate interpretation
of interactions.
74
CHAPTER 4: MAJOR RESEARCH PROJECT PAPER
Treatment adherence in adults with Cystic Fibrosis: an exploratory study
of the influence of self-efficacy, self-esteem and psychological morbidity
Laura E.L. Pettigrew
University Department o f Psychological Medicine
Gartnavel Royal Hospital
1055 Great Western Road, Glasgow, G12 OXH
Prepared in accordance with guidelines for publication in Health Psychology (Appendix
2 . 1)
Word Count 5522
75
Abstract
The aim of the present study was to examine how psychological factors, shown to be
relevant in the self-management of other chronic illnesses, relate to adherence to
treatment in the adult CF population. Sixty-nine participants completed a set of
questionnaires assessing treatment adherence, psychological morbidity, self-esteem and
beliefs about treatment self-management. In agreement with previous research, results
from this study demonstrate that approximately half of adult patients are not fully
adherent to their prescribed medical regimen and that adherence may vary between
treatment components. Participants reported low levels of psychological morbidity and,
contrary to predictions psychological well-being was not related to adherence. Beliefs
about health status and self-management were predictive of adherence, suggesting that
these are possible targets for psychological intervention.
Word count 121
Key Words: Cystic Fibrosis, Adherence, Psychological Morbidity, Health Beliefs
76
Introduction
Cystic Fibrosis (CF) is the most common fatal hereditary disease in the Caucasian
population. Whilst once considered a disease of childhood, advances in the management
and care of patients has led to the majority of individuals with CF surviving into
adulthood (Elbom, 1998). This improved survival rate has been attributed to earlier
diagnosis, multidisciplinary specialist care and more effective methods of treatment.
However, it is likely that the prognosis of CF patients is determined not only by
objective pathophysiological factors, but also by patients’ psychological reactions to
aspects of their disease and its management. Although research examining this issue has
been limited, it is hypothesised that psychological variables influence health status
through their impact on self-management behaviours (Bartholomew, Parcel, Seilheimer,
Czyzewski, Spinelii, & Congdon, 1991; Brown, Rowlet, & Helms, 1994; Caine,
Sharpies, Smyth, Scott, Hathaway, & Higginbottom, 1991).
Without a cure, medical treatment targets only the symptoms of the disease. The daily
medical regime for patients with CF involves a complex and time-consuming range of
treatments. Poor adherence is a common problem within this population and is a major
concern for the various groups involved in patient care (Abbott & Gee, 1998).
Researchers in this field hope to be able to both identify patients at risk of non
adherence and to develop strategies aimed at improving adherence. Understandably,
most studies to date have concentrated on examining predictors of adherence in children
with CF. This research, along with that conducted in other chronic illness populations,
has identified a number of psychological factors that may prove predictive of adherence
in adult CF patients.
77
Firstly, studies have revealed that emotional difficulties can have a negative impact on
patients' ability to self-manage their illness (Bosley, Fosbury, & Cochrane, 1995;
Friedman, Litt, & King, 1986; Littlefield, Craven, Rodin, Danenon, Murray, & Rydall,
1991; Litt, Cuskey, & Rosenburg, 1982; Mazze, Lucido, & Shamoon, 1994; Warren &
Hixenbaugh, 1996). Recent research has revealed that adult CF patients are a well
adjusted group (Anderson, Flume, & Hardy, 2001; Blair, Cull, & Freeman, 1994; De
Jong, Kaptein, & VanderSchans, 1997). However, this does not exclude the possibility
that some patients will experience psychological difficulties. In addition, there is some
evidence to suggest that adolescent females experience greater psychological difficulties
than their male counterparts (Coffman, Levine, Althof, & Stem, 1984; Cowen, Corey,
Simmons, Keenan, Robertson, & Levison, 1984; Sawyer, Rosier, Phelan, & Bowes,
1995; Simmons, Corey, Cowen, Keenan, Robertson, & Lewison, 1985). Concurrently,
these females are less likely to be adherent (Czajkowski & Koocher, 1987; Gudas,
Koocher, & Wypij, 1991; Ricker, Delamater, & Hsu, 1998) and to have a poorer
prognosis (Kerem, Reisman, Corey, Canny, & Levison, 1992). Little is known about the
interaction of these clinical, demographic and psychological factors. It is possible that
the poorer health status of females reflects not only pathophysiological aspects of the
disease, but also poor adherence and psychological adjustment. Which, in turn, may also
be inter-related.
Secondly, research in other chronic illness groups has revealed that patients who
perceive their health to be under threat are more likely to be adherent (Hartmen &
Becker, 1978; Kirscht & Rosenstock, 1977). Results from studies examining the
relationship between illness severity and adherence with adult CF patients have been
equivocal (Abbott, Dodd, & Webb, 1996; Conway, Pond, Hamnett, & Watson, 1996,
Gudas et al., 1991). However, since CF patients' beliefs about their health status may
78
not match objective measures of disease severity (Abbott, Dodd, & Webber, 1995) it is
important to understand how both perceived and actual illness severity relate to
adherence in this group.
Finally, it has been demonstrated that in paediatric CF samples parents who have
confidence in their ability to manage their child's illness and who appraise the outcome
of their actions as being beneficial are more likely to be adherent (Parcel, Swank,
Mariotto, Bartholomew, Czyzowski, Sockrider, & Selheimer, 1994). How self-efficacy
and outcome expectations relate to adherence in the adult CF population requires further
consideration.
Whilst individually these psychological factors may all influence a patient’s ability to be
adherent to their medical regimen, it is also likely that they influence each other. A
perceived inability to be adherent along with negative feedback from carers and medical
staff may have a detrimental effect on the individual's self-esteem and psychological
well being. Conversely, decreased self-esteem and psychological morbidity may
maintain low self-efficacy.
Therefore, the aim of this study is to examine how psychological adjustment, beliefs
about health status and self-management affect treatment adherence in the adult CF
population. Moreover, to examine how these psychological factors relate to each other,
to demographic factors and to clinical factors. The findings of this study may be used to
help design interventions aimed at facilitating improved adherence.
79
Method
Participants
Consecutive patients attending a local adult Cystic Fibrosis Centre were invited to take
part in the study. Ninety-seven patients were approached to take part in the study.
Eleven refused and 86 consented to participate.
Procedure
A brief interview was conducted with each participant. To minimise the "faking of good
effect," interviews were conducted away from the treatment area by a researcher not
directly involved in patient care. The importance of confidentiality was emphasised. The
study questionnaire (made up of the measures below) was explained and left with
patients to be completed alone. Patients returned the questionnaire either at the end of
the clinic or by post. If the questionnaire had not been returned within two weeks a
reminder letter was sent.
Measures
1. The Manchester Adult Cystic Fibrosis Compliance Questionnaire (MCFCQ: Abbott,
Dodd, Bilton, & Webb, 1994). This questionnaire was developed to measure the rates of
adherence, patients' perception of adherence and reasons for non-adherence (Appendix
3.3). Three treatment areas were considered - physiotherapy, pancreatic enzymes and
vitamin supplements. The MCFCQ allows patients to be divided into fully adherent and
non-adherent groups for each treatment component.
2. The Hospital Anxiety and Depression Scale (HAD: Zigmond & Snaith, 1983). This
scale is a 14 item self-rating questionnaire designed to screen for anxiety and depression
80
in patients with physical illness. It contains depression (HAD-D) and anxiety (HAD-A)
subscales scoring from 0-21, where a score of >11 indicates probable disorder.
3. The Rosenberg Self-Esteem Scale (RSE: Rosenberg, 1965, 1989). This ten-item scale
assesses the strength of an individual's perceived self-worth. Possible scores range from
0 to 10, where a score of >6 indicates low self-esteem.
4. The CF Self-efficacy Instrument for Adolescents (SE) and the Outcome Expectation
Instrument for CF (OE) (Bartholomew, Parcel, Swank, & Czyzewski, 1993) were used
to examine patients' beliefs about treatment self-management (Appendix 3.4 & 3.5). The
first scale assesses patients' confidence in being able to manage their illness. Possible
scores range from 0-70, with high scores indicating high treatment management self-
efficacy. The second scale assesses patients' beliefs about the effect of self-management
on disease process and quality of life. It contains 8 items; Possible scores range from 0-
40 with high scores indicating high outcome expectations. Following data collection,
reliability analysis was performed on both scales as they had been slightly modified for
the purpose of this study. Reliability coefficients (Cronbach's alpha) of 0.92 for the SE
scale and 0.76 for the OE scale reflected adequate internal consistency for both.
5. Subjective illness severity. Two visual analogue scales were used to assess patients'
subjective views on their health status (Appendix 3.2). They were asked to rate the
severity of their illness (PIS) and perception of their health in comparison to other
individuals with CF (PHC). A higher score on each reflected a perception of being in
better health. The scales were anchored in this manner in order to mirror FEV, ratings.
81
6. Objective illness severity. Disease severity of participants was categorised using
spirometric determination of lung function. FEVj, the volume of air exhaled during the
first second of forced exhalation was measured. FEV, is analysed as the percentage
predicted based on an individual's height, age and gender (Knudson, Lebowitz, Holberg,
& Burrows, 1983). The normal range is 80-100% of predicted FEV,. Mild pulmonary
disease is 60-80% of predicted FEV,, moderate is 40-60%, and severe is below 40%.
The health professionals involved in the patients' care also provided ratings of
adherence. Research has suggested that health professionals are more accurate if they
rate the element of treatment they have the most involvement in (Conway et al., 1996).
Therefore, the physiotherapist was asked to rate adherence to physiotherapy, the
dietician to rate adherence to pancreatic enzymes and the nurse to rate adherence to
vitamin therapy.
Data analysis
A number of studies in this area have assessed several treatment components and then
combined data to provide an overall adherence score. However, this may fail to reflect
that patients can adhere to one aspect of their treatment but not to others. Therefore, to
prevent loss of information specific to each treatment component, data relating to
physiotherapy, pancreatic enzymes and vitamins were analysed separately.
The main aim of the study was to consider the potential value of certain demographic,
clinical and psychological factors for predicting treatment adherence. Model building
techniques e.g. linear regression, are often employed to answer this type of question.
The aim of these techniques is to find the best fitting and most parsimonious model to
describe the relationship between an outcome i.e. dependent variable and a set of
82
variables i.e. independent variables (Hosmer & Lemeshow, 1995). For this study,
logistic regression is the most appropriate method of analysis as adherence was
measured as a discrete (adherent/ non-adherent) outcome variable. Initially, the relations
between the independent variables were examined using Pearson correlation
coefficients. Secondly, in order to select potential predictor values to be entered into the
logistic regression analysis, univariate analysis of each independent variable was
conducted. Differences between adherent and non-adherent patients were investigated
using independent /-tests and chi-square analysis. Kolmogorov-Smimov and Levene's
tests were applied to the data to assess normality of the distribution and equality of
variances respectively, with results indicating that parametric statistics were appropriate.
Predictors were selected if they met recommended criterion of p < 0.25 and a model was
prepared for each treatment component using a forward procedure. The significance of
the variables in the models are examined by comparison to a model fit with the constant
term only (constant only model).
All analyses were performed using the Statistical Package for Social Sciences (SPSS
Version 9.0 for Windows). Given the number of planned comparisons a conservative
alpha level of p < 0.01 was set for /-tests in order to minimise the chance of a Type 1
error.
Results
Sixty-nine adults returned completed questionnaires, a response rate of 80.23%. The
demographic and clinical pattern of the sample (Table 1) is consistent with recent
surveys of the adult CF population (Walters, 2000; Walters, Britton, & Hudson, 1993).
83
INSERT TABLE 1
In general, the non-responders were a younger and healthier sample. However, no
significant differences were revealed between the groups in relation to gender (%2 =
1.80, p = 0.26), age (t= 1.18, p = 0.06) or lung function (t = -2.01, p = 0.05).
Distribution o f adherence
Only physiotherapy had been prescribed to all patients, the majority (n = 46: 66.7%) of
whom had been advised to perform it twice daily. Fifty-eight (84.1%) patients were
prescribed pancreatic enzymes to be taken with meals and snacks and sixty-two (89.9%)
were prescribed daily vitamins. In accordance with previous research, rates of adherence
varied amongst the treatment components. Approximately one half of patients (n = 36,
52.2%) were classified as fully adherent to physiotherapy, 46.6% (n = 27) were adherent
to their pancreatic enzymes and 61.8% (n = 38) were adherent to vitamins. One quarter
of patients (n = 17, 24.6%) rated themselves fully adherent to all their prescribed
treatments, 52.2% (n = 36) were adherent to some components but not to others, and the
remaining 23.3% (n = 16) did not adhere to any component of treatment.
Reasons given for non-adherence
Patients were asked to provide common reasons for missing therapies. Respondents
could give more than one reason for non-adherence. Reasons given appear to be related
to the perception that treatment is not required if the patient is in good health, a lack of
commitment required in terms of time and effort and a natural tendency to forget (Table
2).
84
INSERT TABLE 2
Comparison with health professionals' ratings o f adherence
The physiotherapist felt unable to provide ratings for fourteen patients because he met
with them infrequently. For similar reasons the dietician rated adherence for 48 patients
and the nurse rated adherence for 58 of the patients. There was a modest (k = 0.40, p =
0.02) level of agreement between patient and physiotherapist's ratings of adherence
(Table 3). There was poorer agreement between the patients and dietician in relation to
enzyme intake ( k = -0.03, p = 0.75) (Table 4) and between patients and nurse in relation
to vitamin intake ( k = -0.04, p = 0.78) (Table 5).
INSERT TABLES 3-5
This unexpected level of discordance led to an exploratory analysis comparing cases
where there was agreement between the patient and the health professional to cases
where there was disagreement. Responses were divided into two groups (agreed or
disagreed on level of adherence) for each treatment component and discordance
examined in relation to the patients' demographic factors, health status (objective and
subjective), emotional adjustment and beliefs about self-management. Unfortunately, no
statistical differences were revealed between groups in any treatment component
(Appendix 4.1). For vitamin adherence the analysis relating to age approached
significance (p = 0.05), with better agreement found between nurse and patients when
the patients were older.
85
Psychological adjustment
Overall, levels of depressive symptoms were low within the sample (Mean HAD-D
score = 2.56, SD = 2.27), the majority of patients falling within the normal range (n =
65, 94.2%). It is notable that no patients scored within the morbid range for depression.
Although a greater number of anxiety symptoms were reported (Mean HAD-A score =
6.38, SD = 3.18), the majority of patients again scored within the normal range (n = 46,
66.7%). Similarly, the majority (n=54, 78.3%) of patients scored within the high self
esteem range of the RSE (Mean score = 1.79, SD = 2.20). Contrary to predictions there
were no significant differences between males and females or between younger and
older patients when compared on measures of psychological adjustment (Appendix 4.2).
Correlations between independent variables
Table 6 shows the Pearson correlations coefficients between the independent variables.
INSERT TABLE 6
I. Demographic measures
Age was not significantly associated with either health status (objective and subjective)
or measures of psychological adjustment. However, there was a significant association
between age and outcome expectancy scores (p = 0.04) with older patients reporting
higher levels of beliefs in the benefits of self-management activities.
II. Health status
There was a significant association between lung function and both perception of illness
severity (p = 0.04) and health in comparison to others (p < 0.01). However, correlational
86
analysis fails to reflect that patients appear to be consistently underestimating the
severity of their lung disease. The majority of patients (79.7%) fell within the moderate
and severe categories of pulmonary disease, yet 61.8% rated themselves towards the
mild end of the subjective illness severity scale (score > 60).
III. Psychological adjustment, self-efficacy and outcome expectations
As expected, patients with lower levels of psychological morbidity had higher levels of
self-efficacy. Both measures of anxiety (p = 0.02) and self-esteem (p = 0.01) were
significantly associated with self-efficacy. The relationship between outcome
expectancy scores and psychological measures was more variable. However, there was a
trend for higher levels of expectancies to be associated with higher self-esteem (p =
0.08).
In relation to measures of health status, there was a significant association between lung
function and depression scores (p = 0.03), patients with poorer lung function reporting a
greater number of symptoms. Similarly, trends were revealed between level of
depression and both perception of illness severity (p = 0.07) and perception of health in
comparison to others (p = 0.08), again with patients who perceived themselves to be
more unwell reporting a greater number of depression symptoms. The relationship
between objective and subjective measures of health status, anxiety, self-esteem and
self-efficacy was more variable. However, perception of illness severity was
significantly associated with outcome expectation score (p < 0.001). Patients who
perceived themselves to be more ill had higher expectations about the benefits of good
self-management.
87
Selection ofpotential predictors o f non-adherence
In order to aid selection of potential predictors of non-adherence planned univariate
analysis was conducted for each treatment component. It is recommended that any
variable whose univariate test has a p < 0.25 should be considered as a candidate for the
multivariate model (Hosmer & Lemeshow, 1995).
I. Demographic measures
Previous research has suggested that adherence varies with age and gender. Results
revealed that for enzymes female patients were less adherent than male patients, this
difference meeting the criteria for inclusion in the logistic regression (%2 = 8.39, p <
0.01). For vitamins the adherent patients were older than non-adherent patients, this
difference meeting criteria for inclusion in the regression analysis (t = 2.30, p = 0.02).
No other differences met the criterion.
II. Health status
The relationship between health status and adherence varied between treatment
components. For physiotherapy, both objective and subjective measures of health status
met criteria for inclusion in the logistic regression analysis, with the non-adherent
appearing to be in better health than the adherent patients (Table 7). For enzymes,
perception of illness severity met criteria for inclusion in regression analysis (Table 8),
again with the non-adherent patients perceiving themselves to be in better health than
the adherent patients. No health status factors met criterion for inclusion in the analysis
related to vitamins (Table 9).
88
INSERT TABLES 7-9
III. Psychological adjustment, self-efficacy and outcome expectancies
Contrary to predictions there was not a strong association between adherence and
measures of psychological adjustment. However, the difference in self-esteem score
reached criterion for inclusion in the regression analysis for both physiotherapy and
vitamins (Table 7&9). In both cases non-adherent patients had lower self-esteem scores
than adherent patients. In addition, the difference in depression score reached criterion
for inclusion in the regression analysis for vitamins, with the non-adherent patients
reporting a higher level of symptoms (Table 9).
In contrast, stronger associations were demonstrated between adherence and beliefs
about self-management. The group differences for self-efficacy and outcome
expectation scores for both physiotherapy and vitamins met criterion for inclusion in
regression analysis (Tables 7&9). Similarly, the group difference for self-efficacy score
met criterion for inclusion in the regression analysis for enzymes. In all cases the non
adherent patients reported poorer self-efficacy and outcome expectancies than the fully
adherent patients.
Logistic regression
In summary, based on the results of the t-tests potential predictors were selected for
initial inclusion in the regression analysis for each treatment component. For
physiotherapy, FEV]5 perception of illness severity, health in comparison to others, self
esteem score, self-efficacy and outcome expectation scores were selected. For enzymes,
89
gender, perception of illness severity and outcome expectation scores were selected. For
vitamins, age, depression, self-esteem, self-efficacy and outcome expectation scores
were selected.
A model was then built for each treatment component to establish the combination of
variables that best predicted adherence. Variables were removed if they contributed no
additional explanatory variance (R) to the prediction of adherence. Table 10 shows
regression coefficients, odds ratios and other relevant statistics for predictor variables in
each treatment component.
INSERT TABLE 10
For physiotherapy, a model comprised of perception health in comparison to others and
outcome expectancy scores was found to be the best predictor of adherence. The model
correctly identified 68% of the fully adherent patients and 69.23% of the non-adherent
patients and was significant (%2 = 16.03, p < 0.01) when tested against a constant only
model. For enzymes, a model comprised of gender and perception of illness severity
was found to be the best predictor of adherence. The model correctly identified 70.8%
of adherent patients and 75.9% of non-adherent patients and was significant (%2 = 11.90,
p < 0.01) when tested against a constant only model. For vitamins, a model comprised
of age and outcome expectation scores was found to be the best predictor of adherence.
The model correctly identified 78.6% of the fully adherent patients but only 45% of
non-adherent patients. A test of the model with these predictors against a constant only
model was significant (x,2 = 8.98, p = 0.01).
90
Discussion
It may be unrealistic to expect adults with CF to strictly follow treatment advice as they
attempt to strike a balance between their psychosocial needs and medical demands.
However, it remains important to identify and address psychological factors that may
negatively affect self-management. Results from this study suggest that psychological
adjustment is not predictive of adherence. In contrast, demographic factors, beliefs
about health status and self-management behaviours are influential, although this varies
between treatment components.
Psychological adjustment
It is encouraging to find that the majority of patients in this sample were in good
psychological health. Consistent with recent research that has reported little or no
difference between the psychological adjustment of CF patients and normal controls
(Anderson et al., 2001; Blair et al., 1994; De Jong et al., 1997), patients reported low
levels of depressive symptomatology and high self-esteem. The greater frequency of
anxiety symptoms reported is consistent with the clinical experience of mental health
professionals working within CF services who have highlighted the need for basic
anxiety management information/treatment to be provided to CF patients (Hains, Hobart
Davies, Behrens, & Biller, 1997; Spirito, Russo, & Masek, 1984). In this sample, gender
and age were not predictive of psychological adjustment.
Results from this study failed to demonstrate an association between measures of
psychological adjustment and treatment adherence. This is perhaps related to the low
levels of psychological morbidity within the sample, with comparative studies in other
chronic illness groups reporting higher levels of both anxiety and depression (e.g.
Bosley et al., 1995). Due to the self-selection of this sample it is possible that the least
91
adherent and/or the most psychological maladjusted patients have either not been
recruited to the study or have not returned questionnaires (Breetvelt & Van Dam, 1991).
Alternatively, these results may highlight that the relationship between adherence and
psychological adjustment is more complex in this patient group in comparison to other
groups previously sampled.
Health beliefs, self-efficacy and outcome expectancies
The demands of the different treatments vary considerably, in terms of behaviours, skills
and time requirements. It is therefore unlikely that a unitary explanation of non-
adherence can be applied to all individuals and all treatment components. However,
results suggest that beliefs about health status and self-management have some
predictive power in determining risk of non-adherence. Firstly, a perception of poorer
health was associated with better adherence to both physiotherapy and enzyme therapy.
Thus, patients are more adherent to these forms of therapy if they perceive that their
health status is compromised. Secondly, for both physiotherapy and vitamin therapy,
patients' who appraised the outcome of self-management tasks as being beneficial to
their health were more likely to be adherent. Moreover, greater confidence in the ability
to adequately perform the tasks necessary to self-manage their illness was also related to
better adherence.
The aim of this study was not to examine any one model of health behaviour, but to
explore more generally psychological factors that may be related to non-adherence.
However, both social cognition and self-regulatory models of illness advocate that
cognitive variables can influence adherence to treatment regimens (Conner & Norman,
1995). The findings in this study are consistent with predictions made in a variety of
models including The Health Belief Model (Rosenstock, 1974), the Theory of Planned
92
Behaviour (Ajzen 1985; Ajzen & Madden, 1986) and the Self-Regulatory Model of
illness (Leventhal, Meyer, & Nerenz, 1980). These models predict that the likelihood of
an action being performed is increased if the perceived threat of the disease is high. In
addition, they predict that patients' beliefs about treatment self-management, which
reflect evaluations of their ability to perform certain tasks and their appraisals of the
outcome, will also influence adherence. Future research should expand upon the current
findings, investigating the potential relevance of these models in more detail with a
larger sample size.
Reasons given for non-adherence
The reasons given by patients for missing therapies highlights the different factors that
affect adherence to each treatment component. Consistent with the data relating to
health beliefs and previous research (Abbott et al., 1996, Conway et al., 1996), common
reasons given for non-adherence to physiotherapy were that patients believed that they
were well enough without it and that the severity of their disease was less than that of
others. In addition, reasons reflected that it is a time-consuming and inconvenient task to
perform. In comparison, reasons provided for non-adherence to the medications
reflected practical issues e.g. not always having enzymes available when deciding to
have a snack or simply forgetting.
The different reasons given for non-adherence to enzymes and vitamins compared with
physiotherapy also highlight the fact that it is not only the physical demands of
treatments but also the social implications of them that potentially influence adherence.
Enzymes must be taken with all meals and snacks. This could prove inconvenient if
individuals either do not wish to discuss their condition or do not want others to know
about it. There is little published literature examining the potential impact of CF patients
93
telling peers, employers etc. about their condition. However, surveys have shown that if
patients reveal that they have CF at a job interview it reduces the likelihood of being
employed (Walters et al., 1993) and/or that they may find it difficult to secure life
insurance, loans and mortgages (Quin, 1992). It is unfortunate that some individuals
may be allowing their health to be compromised because of the fear of negative
evaluations by others.
In addition, a small number of patients, mainly female (4/5), admitted to not taking
enzymes because it aided weight loss. Concurrently, results demonstrated that females
are less adherent than their male counterparts to this form of treatment. Eating disorders
are a recognised clinical problem within this population (Elbom, 1998) yet nutritional
status is related to the clinical course of CF (Elbom & Bell, 1996; Kerem et al., 1992). It
is a challenge for health professionals to encourage patients, in particular young females
who are often quite comfortable with a low body mass index, to be adherent to this form
of treatment.
Objective vs subjective measures of health status
Results suggest that patients' beliefs about the severity of their illness influences
adherence. However, it is recognised that patients' subjective beliefs about their illness
severity do not necessarily match objective measures and that CF patients under-report
the severity of their illness in comparison to the health professionals involved in their
care (Abbott et al., 1995; Pownceby, 1996). Results from this study revealed a
significant association between patients' ratings of health and objective measures of
health status. However, it appears that patients' reports are more optimistic than
objective measures of health status. Denial, as a form of coping, has been reported in
many chronic illness populations and is thought to facilitate emotional adjustment
94
(Edelmann, 2000). Unfortunately, coping mechanisms involving denial and
minimisation have a negative impact on good treatment adherence as patients may fail
to recognise and/or accept the severity of their condition. This poses a difficult
dilemma: if patients use of denial is related to good psychological functioning then it
should be accepted. However, if concurrently it impedes them from engaging in self-
care behaviours, because they deem them only necessary when their health deteriorates,
then these beliefs should be challenged. Prospective research is needed to explore the
interactions of these factors over time.
Patients'vs health professionals' ratings o f adherence
It is unfortunate that results revealed a poor level of agreement between health
professionals' ratings of adherence and patients' ratings. Whether this relates to the
validity of patients' self-ratings or the ability of the health professionals' to recognise
non-adherent patients is open to debate. The patients in this study did not have any
reason to lie, as the researcher was independent of the clinic and confidentiality was
assured. Conversely, the health professionals involved have a high level of contact with
these patients and only provided ratings on patients they felt they knew well enough.
Exploratory analysis of factors that may have been associated with discordance between
patients' and staffs' reports failed to demonstrate any significant associations. These
factors, however, related only to patient and clinical variables. Alternative factors such
as the relationship between the patient and the health professional e.g. frequency of
meetings, quality of relationship etc., may be more strongly associated with
discrepancies in reports. Similarly, characteristics of the health professional e.g. number
of years in practise, beliefs about non-adherence etc., may also be important.
95
Further research is required to help clarify this issue, as it is important that health
professionals are able to identify patients at risk of non-adherence in order to provide
support aimed at improving adherence. As part of this process the factors that lead to
discordance in reports of adherence must also be understood.
Illness severity & psychological morbidity
Previous research within CF and other chronic illness groups has suggested that
psychological well being is relatively independent of the severity of illness (Bradley,
Dempster, Wallace, & Elbom, 1999; Cowen et al., 1984; Drotar, 1981; De Jong, et al.
1997; Moise, Drotar, Doershuk, & Stem, 1987; Stein & Jessop, 1984). However, in this
study there was an association between level of depressive symptoms and both objective
and subjective assessments of health status, with patients in poorer health reporting a
greater number of depression symptoms. Correlations do not imply causation and it is
impossible to determine if poor physical functioning leads to poor psychological
functioning or vice versa. Prospective studies are needed to assess the interaction
between disease severity (objective & subjective) and psychological adjustment.
Limitations
There are a number of limitations with the current study. Firstly, patients were recmited
on the basis of their willingness to take part in the study, therefore, a selection bias
cannot be excluded. Secondly, as noted, self-report measures of adherence can be
unreliable because many patients misjudge their behaviour or deny non-adherence for
fear of being criticised (Litt & Cuskey, 1980; Moise et al, 1987). Unfortunately, whilst
direct measures of medication adherence e.g. analyses of blood and urine samples, are
more objective, they are difficult and expensive to obtain. Thirdly, the anchoring used
on the visual analogue scales assessing patients' beliefs about their health status may
96
been confusing to some patients which, potentially, limits the validity of these
measures. Whilst they correspond to the type of feedback patients may receive from
medical staff regarding their health status, the anchoring is the reverse of what one
might expect from a scale of this type. Fourthly, the correlational and cross-sectional
nature of the present study does not allow precise determination of the direction of
influence of the obtained relationships and further prospective studies are required.
Finally, the predictive models generated in this study explained only a small amount of
the variance. On the basis of statistical evidence the potential value of them for
predicting adherence is limited. However, they are of clinical value when taken in
context with the additional information provided by patients as to why they are non
adherent.
Clinical implications
Results suggest a number of possible avenues for interventions aimed at promoting
good adherence in this population. Patients' self-efficacy beliefs and outcome
expectations should be enhanced. In addition, their beliefs about their health status
should be monitored. It is important that patients are aware that their actions in
following prescribed treatments can make a difference, even if the benefits are not
immediately apparent. Moreover, health professionals should monitor not simply
whether patients are aware of what they should be doing, but also whether they feel that
they are able to adequately perform these tasks. Close monitoring, extensive follow-up
and adequate supervision should aid this process. Concurrently, staff must ensure good
communication between themselves and patients, and attempt to foster an environment
where patients feel comfortable in expressing their difficulties in being adherent and/or
motivations for non-adherence. As part of the process of improving communication and
acceptance between staff and patients and between patients and their peers/employers
97
etc., support groups may provide a forum for patients to discuss the difficulties they face
in attempting to manage their illness effectively. Patients may be able to support and
advice each other on solutions/coping strategies useful in ameliorating some of these
difficulties. Current practice in CF units limits socialisation between patients in order to
reduce the risk of bacterial cross-infection, therefore, support groups of this type would
need to be run on a remote basis e.g. by using the Internet.
Conclusion
Many aspects of the CF medical regimen are prescribed prophylactically, often do not
provide obvious benefit in terms of symptomatic relief or improved health status, and
are not inherently reinforcing. It is likely that a combination of factors predict non
adherence in this population, and that these factors vary in strength depending on the
treatment component under consideration. Results from this study suggest that health
beliefs and attitudes towards self-management are related to adherence and, therefore,
may be incorporated into interventions aimed at improving adherence.
98
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Table 1. Characteristics of the study population*
Characteristics Responders Non-responders
Subjects
Total 69 17
Male 40 (60%) 13 (76.5%)
Female 29 (42%) 4 (23.5%)
Age, yr
Mean 25.78 (7.64) 22.00 (6.23)
Range 16-47 16-34
Median 24 20
FEVj
% predicted 44.45 (19.24) 54.85 (16.68)
< 40% predicted 33 (47.8%) 4 (23.5%)
40-60% predicted 22 (31.9%) 5 (29.4%)
> 60% predicted 14 (20.3%) 8 (47.1%)
Employment status
Employed 28 (40.6%) 4 (23.5%)
Student 20 (30.0%) 8 (47.1%)
Unemployed 9(13.0%) 2 (11.8%)
Housewife/carer 7(10.1%) 2 (11.8%)
Unfit for work 5 (7.2%) 1 (5.9%)
Marital status
Single 51 (73.9%) 15 (88.2%)
Married/ Cohabiting 18(26.1%) 2 (11.8%)
Living arrangements
Lives with family/partner 57 (82.6%) 16(94.1%)
Lives alone 9(13.0%)
Lives with friends 3 (4.3%) 1 (5.9%)
* values given as means (SD) of patients, unless otherwise indicated.
107
Table 2. Reasons given for non-adherence
No. of times given as a reason for non-adherence
PhysiotherapyI feel well without treatment 31I can't always be bothered 29There isn't enough time 21I simply forget 19My CF isn't as serious as most of the other CF patients 19It interferes with my social life 17It's embarrassing 11I resent having to do it 9I do plenty of exercise, so I don't need to do it 8It interferes with family routine commitments 4It makes me feel worse 3I have difficulty doing my own physiotherapy 3I have to rely on someone to help me 2I don't fully understand why I need to do it 1I don't believe that it does me any good 1
EnzymesI simply forget 27I don’t always carry them around with me 23I am embarrassed to take them in front of other people 9I don't want others to know that I have CF 6If I don’t take them it helps me to lose weight/ stay slim 5I only take enzymes when I feel unwell 4My CF isn't as serious as most of the other CF patients 3It interferes with my social life 3I resent having to take them 2My body occasionally needs a rest from medication 1I have difficulty swallowing them 1I have difficulty getting repeat prescriptions 1
VitaminsI simply forget 31I don’t always carry them around with me 7I can’t always be bothered 6I only take them when they are given to me 4I only take them when I feel unwell 3I don't want people to know that I have CF 3I don't believe they do me any good 3I have too many treatments, and this is the least important 2I take more than I am prescribed 1My CF isn't as serious as most of the other CF patients 1I resent having to take them 1I have difficulty swallowing them 1I have difficulty getting repeat prescriptions 1
108
Table 3. Agreement between patients’ self-report of adherence and physiotherapists’
ratings
Patient
Physiotherapist
Non Adherent Fully adherent
Non-adherent r ....... 14 1 5 35.6%
Fully adherent 11 1 65.4%
45.5% 54.5%
109
Table 4. A greem ent betw een patients' self-report o f adherence and dieticians' ratings
for enzym es
Patient
Dietician
N on-adherent Fully adherent
N on-adherent 21 19 88.9%
Fully adherent J
211.1%
53.3% 46.7%
110
Table 5. Agreem ent between patien ts’ self-report o f adherence and nurses’ ratings for
v itam ins
Patient
N urse
N on Adherent Fully adherent
N on-adherent12
21 56.9%
Fully adherent 1015
43.1%
38.0% 62.0%
Table 6. Pearson correlations between independent variables
AGE FEV, PIS PHC HAD-A HAD-D RSE SE
FEV, 0.02
PIS -0.05 0.25*
PHC 0.11 0.35** 0.75***
HAD-A 0.01 0.07 -0.16 -0.15
HAD-D 0.15 -0.26* -0.23 -0.23 0.52***
RSE 0.01 -0.07 -0.12 -0.17 0.26* 0.45***
SE 0.21 -0.01 -0.15 0.01 -0.30* -0.12 -0.33*
OE 0.25* 0.12 -0.37** -0.24 -0.22 -0.06 -0.24 0.77***
* p < 0.05, ** p < 0.01, ***p < 0.001
FEV, = Lung function, PIS = perceived illness severity, PHC = perceived health in
comparison to other CF patients, HAD-A = Anxiety, HAD-D = Depression, RSE = Self
esteem, SE = Self efficacy, OE = Outcome expectations
112
Table 7. Means (SD) and /-test results for adherence to physiotherapy groups and
independent variables
df Non-adherent Fully adherent p value
FEV! 67 48.30(16.59) 40.91(21.00) -1.61 0.11
PIS 61 76.32(16.49) 64.44 (24.26) -2.27 0.03
PHC 61 79.19(16.70) 63.62 (22.72) -3.07 <0.01
HAD-A 67 6.61 (2.93) 6.17(3.43) -0.57 0.57
HAD-D 67 2.72 (2.38) 2.77 (2.38) 0.59 0.55
RSE 66 2.12(2.48) 1.50 (1.89) -1.18 0.24
SE 61 54.53 (10.74) 59.11 (8.50) 1.78 0.04
OE 61 31.52 (4.87) 35.44 (3.67) 3.40 <0.01
FEV! = Lung Function, PIS = perceived illness severity, PHC = perceived health in
comparison to other CF patients, HAD-A = Anxiety, HAD-D = Depression, RSE = Self
esteem, SE = Self-efficacy, OE = Outcome expectations
113
Table 8. Means (SD) and Mest results for adherence to enzyme groups and independent
variables
df Non-adherent Fully adherent t p value
FEV, 56 46.19(18.59) 40.64 (21.19) -1.06 0.29
PIS 51 72.96(18.71) 61.71 (23.57) -1.94 0.04
PHC 51 71.31 (22.01) 66.00 (20.54) -0.90 0.37
HAD-A 56 6.32 (3.04) 6.44 (3.51) 0.14 0.89
HAD-D 56 2.51 (2.28) 2.44 (2.15) -0.12 0.90
RSE 55 1.81 (2.30) 1.58 (1.86) -0.41 0.68
SE 51 55.86 (9.68) 59.25 (10.36) 1.15 0.26
OE 51 32.93 (4.77) 34.84 (4.61) 1.36 0.18
FEV, = Lung Function, PIS = perceived illness severity, PHC = perceived health in
comparison to other CF patients, HAD-A = Anxiety, HAD-D = Depression, RSE = Self
esteem, SE = Self-efficacy, OE = Outcome expectations
114
Table 9. Means (SD) and /-test results for adherence to vitamins groups and independent
variables
df Non-adherent Fully adherent t p value
FEV] 60 45.38 (18.50) 42.99 (8.33) -0.46 0.65
PIS 55 70.52 (21.99) 67.97 (22.02) -0.42 0.68
PHC 55 70.31 (21.51) 67.50 (21.69) -0.48 0.63
HAD-A 60 6.87 (3.34) 5.89 (3.16) -1.16 0.25
HAD-D 60 3.12(2.59) 2.08 (1.99) -1.79 0.08
RSE 59 2.21 (2.56) 1.37(1.72) -1.55 0.13
SE 55 54.16(8.67) 59.90 (9.93) 2.13 0.04
OE 55 32.25 (4.72) 35.15(4.10) 2.29 0.03
FEV, = Lung Function, PIS = perceived illness severity, PHC = perceived health in
comparison to other CF patients, HAD-A = Anxiety, HAD-D = Depression, RSE = Self
esteem, SE = Self-efficacy, OE = Outcome expectations
115
Table 10. Results of logistic regression analysis and the set of variables that best predict
adherence for each treatment type
B SE Wald df Significance R Odds Ratio
Exp(B)
Physiotherapy
PHC 0.04 0.02 5.04 1 0.02 0.20 1.04
OE -0.19 0.08 6.08 1 0.01 -0.24 0.82
Enzymes
Gender -1.75 0.65 7.20 1 <0.01 -0.27 0.17
PIS 0.03 0.02 3.88 1 0.04 0.16 1.03
Vitamins
Age -0.11 0.06 2.84 1 0.09 0.11 0.90
OE -0.12 0.07 2.55 1 0.11 0.09 0.89
PIS = perceived illness severity, PHC = perceived health in comparison to other CF
patients, OE = Outcome expectations
116
CHAPTER 5: CLINICAL CASE RESEARCH STUDY
Might waking during; infancy: an experimental investigation o f the impact
o f withdrawal o f parental presence at bedtime.
Laura E.L. Pettigrew
University D epartm ent o f Psychological M edicine
Gartnavel R oyal H ospital
1055 Great Western Road, Glasgow, G12 OXH
Prepared in accordance with guidelines for publication, in thie Journal o f C hild
Psychology and Psychiatry and A llied Disciplines (Appendix 5.1 )
W ord Count 3 80)2
117
Abstract
Sleep disorders are highly prevalent among young children and can be extremely
disruptive to family life. It is proposed that the method by which parents manage their
child’s sleep difficulties may contribute to the maintenance of the problem. Behavioural
models suggest that parental presence at bedtime may contribute to settling difficulties
and night waking as it can impede the child’s ability to develop appropriate
discriminative stimuli to falling sleep. Using a multiple baseline design this study
examined the impact of withdrawal of parental presence on bedtime disturbance and
night waking in an 18-month-old boy. Results indicated that a modified graduated
extinction procedure (gradually increasing the time before attending to the child’s
crying) resulted in reduction in these sleep problems. However, in this study increasing
the child’s opportunity to gain self-soothing skills at bedtime did not result in an
immediate reduction in night waking. This highlights the role that excess parental
attention during the night can play in contributing to the maintenance of this problem. It
is concluded that chronic sleep problems in children may be amenable to behavioural
intervention.
Word count =176
Abbreviated Title: The impact of withdrawal of parental presence at bedtime on night
waking during infancy.
118
APPENDICES
APPENDIX 1. Small Scale Service Evaluation Project Pages
1.1 Guidelines for submission to Health Bulletin 120
1.2 Psychology in General Medicine Questionnaire 121
1.3 Comments made by referrers re: change in service 125
1.4 Results of Chi-square analysis 126
1.5 Comments made by referrers re: additional feedback 127
APPENDIX 2. Major Research Project Literature Review
2.1 Guidelines for submission to Health Psychology 128
APPENDIX 3. Major Research Project Proposal
3.1 D.Clin.Psy guidelines for major research project proposal 130
3.2 Visual Analogue Scales for assessing subjective illness severity 131
3.3 Manchester Adult Cystic Fibrosis Compliance Questionnaire 132
3.4 Self-efficacy Instrument for Adolescents 136
3.5 Outcome Expectation Instrument for Cystic Fibrosis 137
3.6 Information sheet for patients 139
3.7 Consent form for patients 141
3.8 Confirmation of ethical approval 142
APPENDIX 4. Major Research Project Paper
4.1 Results of exploratory analysis for adherence discrepancies 143
4.2 Results of multivariate analysis 146
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Appendix 1.1
Notes for Contributors
Papers, articles and other contributions should be sent to the Editor, Health Bulletin, Scottish Executive
Health Department, Room IE05, St Andrew's House, Edinburgh EH1 3DE. They must be submitted
exclusively for Health Bulletin. Acceptance is on the understanding that editorial revision may be
necessary. All papers are reviewed by the Editor and by peer review, referees being drawn from a panel
o f appropriate professionals. N o correspondence can be entered into in relation to articles found to be
unsuitable and returned to authors.
Potential contributions can be submitted in two ways. Material submitted for publication must be
typewritten on one side o f the paper only, in double spacing and with adequate margins, and each page
should be numbered. The top typed copy should be submitted, with four other copies. We are willing to
receive one copy typewritten in the above format and accompanied by a disk (Microsoft Word version
98, Excel for tables and figures). All papers should be prefaced by a structured Abstract, o f about 250
words in length. It should normally contain six clearly headed sections entitled Objective, Design,
Setting, Subjects, Results and Conclusion. The name, appointment and place o f work o f the authors
should be supplied on a separate title page. This same page should include the full postal address o f one
author, to whom correspondence and reprints will be directed. There should be adequate references to
any relevant previous work on the subject; these references should appear at the end o f the material on a
separate page or pages, using the Vancouver style, which in the case o f papers in journals includes:
Surname and initials o f author(s)
Title o f paper
Full name o f journal
Year published
Volume number
Opening and closing page numbers
Reference to books should similarly include author's name and initials, full title, edition (if necessary),
place o f publication, publisher's name, year and, if required, volume number, chapter number or page
number.
Short Com m unications. Health Bulletin publishes short communications (not exceeding four pages in
length) as a separate section, and we aim to offer speedier publication for these. Material intended for this
section should be submitted in the above form, and the covering letter should state the intention.
Copyright. The material in Health Bulletin is copyright. Items may be freely reproduced in professional
journals, provided that suitable acknowledgment is made and that reproduction is not associated with any
form o f advertising material. In other cases, permission to reproduce extracts should be sought through
the Editor from HMSO (Copyright Section) which controls the copyright.
Proofs
Contributors w ill receive one set o f proofs. This should be read carefully for printer's errors, and any
tables, figures and legends should be checked. Alterations should be kept to a minimum, and the proofs
should be returned promptly. Ten reprints w ill be supplied free o f charge.
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Appendix 1.2
PSYCHOLOGY IN GENERAL MEDICINE QUESTIONNAIRE
Please help us to improve our service by answering the following
questions. We are interested in your honest opinions, whether they are
positive or negative. We also welcome your comments and suggestions.
Thank you very much, we appreciate your help.
PLEASE RETURN THIS QUESTIONNAIRE IN THE ENVELOPE PROVIDED
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Clinical Psychology has been operating a small, dedicated service to general medicine for just over one year.
1. Prior to this contact were you aware of this service ? yes/no
2. Have you made a referral to this service (or asked any member of your team to
make a referral) ? yes/no
I f Yes please answer the following. I f No vlease ignore O. 2a-3, and go to question 4
overleaf
2a. In an overall, general sense, how satisfied are you with the service?
Very satisfied M ostly satisfied Indifferent or mildly dissatisfied
Quite dissatisfied
1 2 3 4
2b. Did you get the kind of service you wanted?
N o, definitely not No, I don't think so Yes, I think so Yes, definitely
4 3 2 1
2c. Do you think that the intervention was beneficial to your patient?
N o, definitely not No, I don't think so Yes, I think so Yes, definitely
4 3 2 1
2d. How satisfied are you with the length of time between your referral to the Psychology
service and an appointment being available to your patient?
Very satisfied M ostly satisfied Indifferent or mildly dissatisfied
Quite dissatisfied
1 2 3 4
2e. How satisfied are you with the communication between you and the Psychology service
(telephone & written communication)?
Very satisfied M ostly satisfied Indifferent or mildly dissatisfied
Quite dissatisfied
1 2 3 4
2f. Do you think that you will make more referrals in the future?
N o, definitely not No, I don't think so Yes, I think so Yes, definitely
4 3 2 1
3. Are there any aspects of the service that you would like changed? Please specify,
(please continue on a separate sheet if necessary)
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To be answered by all.
4. For the following please indicate whether you agree or disagree that these
psychological services would be useful to your patients. Alternatively you may
be undecided because you require more information about, or evidence of, their
potential benefits to your patients. If you feel that any are not applicable to your
speciality please tick the final column.
PLEASE TICK ONE COLUMN ONLY
Agree-useful
Disagree- not useful
N eed more information about service
N ot applicable
AssessmentN europsychological assessm ent
Preparation
Psychological preparation for m edical/surgical interventionManagementPsychological help with em otional problem sPsychological approaches in pain m anagem entPsychological help with post- traum atic stressProblem s with adherence to treatm entEating and sm oking disorders
AdjustmentPsychological help for adjustm ent problem s to chronic illness/disabilityC ounselling relatives for adjustm entRehabilitationInvolvem ent with rehabilitation
BereavementC ounselling the dying
C ounselling relatives
StaffStaff support e.g. bereavem ent supportS ta ff education/training
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5. Is a Psychology service only of use to you if the referral can be responded to
whilst the patient is in hospital ? yes/no
6. Would you like more contact with the Psychology service? yes/no
If yes, how would this contact be best provided (please rate your first and second
choice):-
Rating (1st & 2nd choice)1. Formal presentation to group of
staff2. Written information e.g. leaflet3. Informal visit to your department4. Case discussion
7. Are there any other comments you would like to make ? (please continue on a
separate sheet if necessary)
124
Appendix 1.3
Comments made by referrers when asked if there were aspects of the service that
they would like changed.
“Opportunity for telephone referral”
“Rapid response time”
“Patients have to wait far too long, often the acute event has resolved making the
referral irrelevant”
125
Appendix 1.4
Chi-square analysis of referrers’ compared with non-referrers’ perception of
usefulness of psychological interventions.
Chi-square P
Psychological help for emotional problems 0.093 0.760
Pain management 0.285 0.593
Counselling relatives of the dying 0.006 0.940
Staff education/training 0.117 0.732
Adjustment to illness/disability 0.137 0.711
Counselling the dying 0.006 0.940
Staff support 0.042 0.837
Counselling relatives for adjustment 0.181 0.671
Adherence to treatment 1.174 0.278
Eating and smoking disorders 0.375 0.840
PTSD 0.033 0.856
Neuropsychological assessment 0.524 0.469
Rehabilitation 0.524 0.469
Psychological preparation for medical/surgical intervention 0.964 0.326
126
Appendix 1.5
Comments made by referrers when given the opportunity to provide additional
feedback.
“I suspect there is a great unmet need for this service” (Medicine for the elderly)
“Is there any way waiting times for appointments (in any age group) can be reduced?
They are totally unacceptable for anyone who needs to be seen urgently” (Medicine for
the elderly)
“I have a special interest in menapouse/climacteric - input from Clinical Psychology is
very relevant and any help would be greatly appreciated” (Gynaecology)
“I would rarely refer and even then act through the GP” (Opthamology)
“As a diabetes consultant the psychology service can be very useful. However, in
practical terms I don’t know much about the current service” (Medicine)
“I am interested to explore further the potential benefit of psychological therapy in the
potential management of chronic pain syndromes” (Orthopaedic surgeon).
127
Appendix 2.1
Health PsychologyManuscript Submission Guidelines
Submit two manuscript copies and a floppy disk with an electronic version of the paper (MS Word or Word Perfect word processing formats are fine) to:
Arthur A. Stone, PhD Department of Psychiatry Putnam Hall, South Campus State University of New York at Stony Brook Stony Brook, NY 11794-8790
The preferred length o f manuscripts is 25-30 double-spaced pages, including references, notes, tables, captions, and figures. A ll copies should be clear, readable, and on paper o f good quality. A dot matrix or unusual typeface is acceptable only if it is clear and legible. In addition to addresses and phone numbers, authors should supply electronic mail addresses and fax numbers, i f available, for potential use by the editorial office and later by the production office. Authors should keep a copy o f the manuscript to guard against loss.Authors may submit a list o f suggested reviewers for the paper; suggested reviewers should not, o f course, have any conflict o f interest regarding the review. Masked review may be requested by the author. Authors requesting masked review should include a cover sheet, that shows the title o f the manuscript, the authors' names and institutional affiliations, and the date the manuscript is submitted. The first page o f the manuscript should omit the authors' names and affiliations but should include the title o f the manuscript and the date it is submitted.Manuscript PreparationPrepare manuscripts according to the Publication Manual o f the American Psychological Association (4th ed.). Type all components o f the manuscript double-spaced, including title page, abstract, text, quotes, references, appendixes, author note, footnotes, tables, and figure captions. All manuscripts must include an abstract containing a maximum o f 960 characters and spaces (which is approximately 120 words). After the abstract include four to six key words or phrases. All manuscripts are copyedited for bias-free language (see chap. 2 o f the Publication Manual). Original color figures can be printed in color provided the author agrees to pay half o f the associated production costs.Instructions for preparing abstracts, tables, figures, metrics, and references appear in the Manual. References should be cited in text as follows: "The results replicated those o f a previous study (Knoth & Mair, 1991)," or "The procedure was a modification o f Krettek and Price (1989) and Smith et al. (1977)." Multiple references should be cited in alphabetical order: Earlier investigations (Abbott, 1988; Hunt & Aggleton, 1983; Winocur, 1985). . . . Each listed reference should be cited in text, and each text citation should be listed in the reference section. Some examples o f common types o f references— a journal article, a book, and a book chapter— follow:Barnett, R. C., Davidson, H., & Marshall, N. L. (1991). Physical symptoms and the interplay o f work and family roles. Health Psychology, 10, 94-101.Cohen, J., & Cohen, P. (1975). A pplied multiple regression/correlation analysis fo r the behavioral sciences. Hillsdale, NJ: Erlbaum.Haynes, S. G., Eaker, E. D., & Feinleib, M. (1984). The effect o f employment, family, and job stress on coronary heart disease. In E. B. Gold (Ed.), The changing risk o f disease in women: An epidem iologic approach (pp. 37-48). Lexington, MA: Heath.Submission LetterAuthors are required to include the following in their submission letter:1. a statement o f compliance with APA ethical standards in the treatment o f their sample, human or animal, or a description o f the details o f the treatment (see below);2. a statement that the manuscript or data have not been published previously and that they are not under consideration for publication elsewhere;3. a statement to reflect that all listed authors have contributed significantly to the manuscript and consent to their names on the manuscript; and
128
4. a brief statement o f how the article content is relevant to the domain o f Health Psychology as described in the journal inside cover (see Content).Failure to include any o f the requirements above may result in a delay o f the review process.Brief ReportsHealth Psychology accepts Brief Reports o f soundly designed research studies that are o f specialized interest or limited importance— reports that cannot be accepted as regular articles due to lack o f space.An author who submits a Brief Report must agree not to submit the full report to another journal. To ensure that a Brief Report does not exceed the available journal pages (approximately 4 pages), set your computer so that (a) the approximate number o f characters per line is 65 (this can be achieved by using 12-point type with left and right margin widths o f 1.0-1.5 in.), (b) the number o f double-spaced lines per page is about 25, and (c) the total number o f lines in the report is about 400. Count all lines, including headings and references but excluding title, author name(s), affiliation(s), and abstract; figure 27 lines for each 1/4 journal page required for tables and figures (visual estimation necessary).Letters to the EditorHealth Psychology w ill now consider letters concerning papers previously published in the journal.Letters should be no more than 500 words in length and have a maximum o f five references. Letters may be sent electronically to the journal's editorial assistant, Michelle McCarren, [email protected]. Authors w ill be notified o f the decision to publish the letter and w ill be sent an edited version. Authors o f the original article will be offered an opportunity to reply to the letter. N o additional letters on the topic w ill be accepted.Ethical PrinciplesAuthors are required to obtain and provide to APA all necessary permissions to reproduce any copyrighted work, including, for example, test instruments and other test materials or portions thereof. APA policy prohibits an author from submitting the same manuscript for concurrent consideration by two or more publications. In addition, it is a violation o f APA Ethical Principles to publish "as original data, data that have been previously published" (Standard 6.24). As this journal is a primary journal that publishes original material only, APA policy prohibits as well publication o f any manuscript that has already been published in whole or in substantial part elsewhere. Authors have an obligation to consult journal editors concerning prior publication o f any data upon which their article depends.In addition, APA Ethical Principles specify that "after research results are published, psychologists do not withhold the data on which their conclusions are based from other competent professionals who seek to verify the substantive claims through reanalysis and who intend to use such data only for that purpose, provided that the confidentiality o f the participants can be protected and unless legal rights concerning proprietary data preclude their release" (Standard 6.25). APA expects authors submitting to this journal to adhere to these standards. Specifically, authors o f manuscripts submitted to APA journals are expected to have available their data throughout the editorial review process and for at least 5 years after the date o f publication. A copy o f the APA Ethical Principles may be obtained by writing the APA Ethics Office,750 First Street, NE, Washington, DC 20002-4242.APA requires authors to reveal any possible conflict o f interest in the conduct and reporting o f research (e.g., financial interests in a test procedure, funding by pharmaceutical companies for drug research). ProductionAuthors whose manuscripts have been accepted for publication are encouraged to submit their finalized manuscripts on computer disks. Manuscripts are copy edited and typeset directly from disks when possible. Authors receive edited manuscripts and page proofs for review.
129
Appendix 3.1 D.Clin.Psy guidelines for major research project proposal
1.1 Applicants - names and addresses including the names of co-workers and supervisors) if known.
1.2 Title - no more than 15 words.
1.2 Summary - No more than 300 words, including a reference to wherethe study will be carried out.
1.4 Introduction - of less than 600 words summarising previous work in the field, drawing attention to gaps in present knowledge and stating how the project will add to knowledge and understanding.
1.5 Aims and hypothesis to be tested - these should wherever possible be stated as a list of questions to which answers will be sought.
1.6 Plan of investigation - consisting of a statement of the practicaldetails of how it is proposed to obtain answers to the questions posed. The proposal should contain information on Research Methods and Design i.e.
1.6.1 Subjects - a brief statement of inclusion and exclusion criteria and anticipated number of participants.
1.6.2 Measures - a brief explanation of interviews/observations/ rating scales etc. to be employed, including references where appropriate.
1.6.3 Design and Procedure - a brief explanation of the overall experimental design with reference to comparisons to be made, control populations, timing of measurements, etc. A summary chart may be helpful to explain the research process.
1.6.4 Settings and equipment - a statement on the locations) to be used and resources or equipment which will be employed (if any).
1.6.5 Data analysis - a brief explanation of how data will be collated, stored and analysed.
1.7 Practical applications - the applicants should state the practical use to which the research findings could be put.
1.8 Timescales - the proposed starting date and duration of the project.
1.9 Ethical approval - stating whether this is necessary and, if so, whether it has been obtained.
130
Appendix 3.2
Visual Analogue Scales for the assessment of health status
1. Overall, how severe do you feel your illness is at this time? (please place a X on the line)
0 100Most severe Mildestrating rating
2. In comparison with other individuals with CF, how healthy do you think you are at this time? (please place a X on the line)
0____________________ 50____________________ 100Sicker About the Healthier
same
131
Appendix 3.3
The Manchester Cystic Fibrosis Compliance Questionnaire
The following questions ask you about your treatment. So that we can assess how effective your treatment is, please answer all the questions honestly.
1. How often do you attend the CF outpatient clinic?__________________ per year
How often do you attend as an inpatient?_______________________per year
Physiotherapy
2. How many times each day has it been suggested that you should do
physiotherapy?_______________________per day
3. Over the last three months, which of the following statements best describe youTick one box only
1. I do my physiotherapy once or twice each day, every day2. Occasionally I miss one or two days physiotherapy3. I often miss one or two days physiotherapy4. I often miss several days physiotherapy5. The only time I do my physiotherapy is when I feel unwell6. I never do my physiotherapy
4. Please tick the boxes which best describe you. When I miss my physiotherapy it is usually because.
Tick as many boxes as you like1. I feel well without treatment2. It interferes with my social life3. There isn't enough time4. I have to rely on someone to help me5. I simply forget6. My CF isn't as serious as most of the other CF patients7. It interferes with family routine commitments8. I can't always be bothered9. I don't believe that it does me any good10. I have to many different treatments to attend to, and physiotherapy is the least
important of them11. It makes me feel worse12. I don't fully understand why I need to do physiotherapy13. I do plenty of exercise, so I don't need to do physiotherapy14. I don't know how to do it15. I have difficulty doing my own physiotherapy16. I resent having to do it17. It's embarrassing18. OTHER, please specify
132
5. Do you think that the amount of physiotherapy you do is:Tick one box only
About right Not enough Too much Don't know
6. Do you have help with your physiotherapy? Yes No
If YES, please give details
7. What age were you when you started having physiotherapy?______________
Do you know what made you start?_____________________________________
Exercise
8. Has it been suggested to you by the medical staff that you should do exercise?
Yes No
If YES how much ? per week
9. Do you do any exercise? Yes No
If YES, what do you do and how often?________________ per week I______________________ e.g. play football, go to aerobics, go swimming.
11. If I don't exercise at all, or my usual exercise sessions lapse, it tends to be because:
Tick as many boxes as you like1. I don’t enjoy exercise2. I simply forget3. Most of the time I don't feel well enough to exercise4. I resent having to exercise5. I don't fully understand why I should exercise6. I have too many different treatments to attend to, and exercise is the least
important of them7. I don't believe it does me any good8. I haven't enough time9. I don't want to lose weight10. I can't always be bothered11. Exercise makes me feel worse12. It interferes with my social life13. Exercise makes me too breathless14. OTHER, please specify
133
12. Do you think your present level of exercise is:Tick one box onlyAbout right Not enough Too much Don't know
Pancreatic enzymes
13. Are you prescribed enzymes? Yes No
If YES, do you take your enzymes with a MAIN meal?Tick one box onlyNever Occasionally Usually Always
14. How many do you usually take with a MAIN meal?
15. With a MAIN meal do you take them:Tick one box only
Throughout the mealOnly at the beginning of the mealOnly at the end of the meal
16. Do you take them with snacks?Tick one box onlyNever Occasionally Usually Always
17. If I don’t take my enzymes it is usually because:Tick as many boxes as you like
1. I only take them when they are given to me2. I am embarrassed to take them in front of other people3. I don't like the taste4. I have difficulty swallowing them5. I have difficulty getting repeat prescriptions6. I simply forget7. My body occasionally needs a rest from medication, otherwise I may become
immune to them, and they will not work when I really need them8. I only take enzymes when I feel unwell9. I resent having to take them10. I don't want my friends/colleagues to know that I have CF11. I don't fully understand why I need to take them12. My CF isn't as serious as most of the other CF patients13. I have too many different treatments to attend to, and this is the least important of
them14. I don't believe that they do me any good15. They make me feel worse16. It interferes with my social life17. I don’t always carry them around with me18. If I don’t take them it helps me to lose weight and/ or to stay slim19. OTHER, please specify
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18. Do you think that your pancreatic enzyme intake is:Tick one box onlyAbout right Not enough Too much Don't know
19. Do you eat whatever you like? Yes Do you eat a fat-free diet?Do you eat a vegetarian diet? Yes
Yes NoYes NoYes No
Vitamins
20. Are you prescribed vitamins? Yes No
21. If YES, what has been prescribed, and how often should you take them?
22. How often do you actually take your vitamins?Tick one box onlyNever Occasionally Usually Always
23. If I don't take my vitamins as prescribed it is usually because.Tick as many boxes as you like
1. I only take them when they are given to me2. I don't like the taste3. I have difficulty swallowing them4. I take more than has been prescribed for me5. I have difficulty getting repeat prescriptions6. They make me feel worse7. I simply forget8. My body occasionally needs a rest from medication, otherwise I may become
immune to them, and they will not work when I really need them9. I only take vitamins when I feel unwell10. I resent having to take them11. I don't want my friends/colleagues to now that I have CF12. I don't fully understand why I need to take them13. My CF isn't as serious as most of the other CF patients14. I have too many different treatments to attend to, and this is the least important of
them15. I don't believe that they dome nay good16. I can't always be bothered17. I don’t always carry them around with me18. OTHER, please specify
24. Do you think that your vitamin intake is:Tick one box onlyAbout right Not enough Too much Don't know
135
Appendix 3.4
Self-efficacy Instrument for Adolescents
Here is a list of statements that relate to how you feel about yourself and your medical treatment. Please indicate how sure you are that you could do each of them.
Circle one number for every statementNot at all
sureModerately
sureVerysure
Decide what you need to talk about with your doctor or nurse
Notice whether your doctor or nurse is understanding what you are saying
Identify feelings in yourself that you wish to discuss
Judge how the doctor or nurse will react when you talk about your feelings
Figure out several ways to solve a problem
Use several methods to make yourself feel better when you have a problem or are distressed.
Accept CF as your diagnosis
Accept that CF may present new problems to you and your family at any time
Accept that CF-related problems will demand that you and your family make changes and adjustments
Notice changes in cough, sputum, and shortness of breath that might indicate a chest infection.
Tell when symptoms mean that you have developed a chest infection
Ask other questions when you do not get an answer or do not understand an answer from your doctor or nurse
Use the right words when talking about your CF or describing your symptoms to your doctor or nurse
Do medical treatments as often as your doctor suggests*
4 5
4 5
4 5
4 5
4 5
* This question was modified from “do physiotherapy as often as your doctor suggests’ in order to reflect multiple treatment components under consideration
136
Appendix 3.5
Outcome Expectation Instrument for Cystic Fibrosis
Please answer the following questions.
1. How sure are you that it is beneficial for your health to do the medical treatments that has been recommended to you?* (Circle one number)
Not at all sure Moderately Very suresure
1 2 3 4 5
2. How sure are you that it is beneficial for your health to keep a close eye on changes in your symptoms? (Circle one number)
Not at all sure Moderately Very suresure
1 2 3 4 5
3. How sure are you that it is beneficial for your health to be able to decide what to talk about with your doctor/ nurse? (Circle one number)
Not at all sure Moderately Very suresure
1 2 3 4 5
4. How sure are you that it is beneficial for your health to be able to understand what your doctor/ nurse is telling you? (Circle one number)
Not at all sure Moderately Very suresure
1 2 3 4 5
5. How sure are you that it is beneficial for your health to talk with your doctor/ nurse about how you are feeling? (Circle one number)
Not at all sure Moderately Very suresure
1 2 3 4 5
137
6. How sure are you that it is beneficial for your health to be able to talk to your friends and family about how you are feeling? (Circle one number)
Not at all sure Moderately Very suresure
1 2 3 4 5
7. How sure are you that it is beneficial for your health to be good at organising your time? (Circle one number)
Not at all sure Moderately Very suresure
1 2 3 4 5
8. How sure are you that it is beneficial for your health to be good at solving problems? (Circle one number)
Not at all sure Moderately Very suresure
1 2 3 4 5
* This question was modified in order to reflect multiple treatment components under consideration.
138
Appendix 3.6
THIS SHEET HAS BEEN APPROVED BY THE WEST ETHICS COMMITTEE
INFORMATION SHEET FOR PATIENTS/VOLUNTEERS IN CLINICAL RESEARCH
PROJECT
Brief Title of Project
Treatment adherence in adults with Cystic Fibrosis: the influence of self-efficacy, self
esteem and psychological morbidity.
Patient’s Summary (Purpose of study, nature of procedure, discomfort and possible
risks in terms which the patient or volunteer can understand).
INTRODUCTION
You are invited to take part in a study of adherence to treatment of adults with Cystic
Fibrosis.
WHAT IS THE PURPOSE OF THE STUDY?
This study will look at the difficulties people have following their prescribed treatments for
Cystic Fibrosis. It will focus on how they feel about themselves and what they think about
their prescribed treatments.
WHO IS ORGANISING THE STUDY?
The study has been organised by Laura Pettigrew, who is currently training in the
Department of Psychological Medicine.
WHAT WILL HAPPEN TO ME IF I TAKE PART?
If you decide to take part in this study, you will be asked to fill in a short questionnaire. You
can do this either by yourself or, if you would like help, by discussing it with Ms Pettigrew.
It will take approximately 30 minutes of your time to complete the questionnaire. You will
not be asked to complete any further assessments.
139
WHAT ARE THE POSSIBLE RISKS?
There are no foreseeable risks involved in this project. Some people might feel a little bit
uncomfortable talking about their concerns. If you feel too uncomfortable, you need not
carry on filling out the questionnaires.
WHAT ARE THE POSSIBLE BENEFITS?
It is not anticipated that you will experience any direct benefit from participating in this
study. It is hoped, however, that the information provided could be used in the development
of treatment for the benefit of future patients.
WHO WILL KNOW WHAT I HAVE SAID?
Any information that you give will be treated in strict confidence and will be stored in a safe
place. You will not be identified by name during the study and, if publication of the results
follows, your anonymity will be assured.
Ms Pettigrew will have access only to parts of your medical records that are relevant to the
study. Information will not be given to any other health professional unless they first gain
your written permission. However, your family doctor will be informed that you are taking
part.
WHAT WILL HAPPEN IF I DECIDE NOT TO PARTICPATE?
You are under no obligation to participate in this study and should feel completely free to
decide not to take part. If you do agree to take part, you can withdraw from the study at any
time without having to give an explanation. If you do not choose to participate or decide to
withdraw, your care and treatment will not be affected in any way.
IF YOU HAVE ANY FURTHER QUESTIONS ABOUT THE STUDY PLEASE
CONTACT ME ON: 0141 211 3920. My name is Laura Pettigrew. I am based within the
Department of Psychological Medicine, Gartnavel Royal Hospital. Glasgow. G12 OXH.
140
Appendix 3.6
WEST ETHICS COMMITTEE
FORM OF CONSENT FOR PATIENTS/VOLUNTEERS IN CLINICAL RESEARCH PROJECT
Title of Project:
Treatment adherence in adults with Cystic Fibrosis: the influence of self-efficacy, self
esteem and psychological morbidity.
By signing this form you give consent to your participation in the project whose title is at the top of this page. You should have been given a complete explanation of the project to your satisfaction and have been given the opportunity to ask questions. You should have been given a copy of the patient information sheet approved by the West Ethics Committee to read and to keep. Even though you have agreed to take part in the research procedures you may withdraw this consent at any time without the need to explain why and without any prejudice to your care.
Consent:
I,........................................................................................................................(PRINT)
of........................................................................................................................
give my consent to the research procedures above, the nature, purpose and possible consequences of which have been described to me
by
Patient’s signature........................................................... Date.
Doctor’s signature.
West Glasgow HospitalsPART OF THE NORTH GLASGOW UNIVERSITY HOSPITALS NHS TRUST
WEST ETHICS COMMITTEE Western Infirmary Dumbarton Road Glasgow G il 6NT
Appendix 3.7
Our R ef AHT
Your Ref:
Please reply to: Mrs A H TorrieDirect Line: 211 6238 Fax: 211 1920 .
SECRETARY - WEST ETHICS COMMITTEE21 June, 2000
Ms Laura PettigrewDepartment of Psychological MedicineGartnavel Royal HospitalGlasgow
Dear Ms Pettigrew,
00/85(2) Ms L Pettigrew - Treatment adherence in adults with Cv^tic
The Committee at the meeting held on 20 June, 2000 discussed and approved the above study but
would also like sight the recruitment letter sent to patients.
The above should come back to me for checking and filing.
Please note that the approval contained in this letter is valid for all sites which: form part o f the North Glasgow Trust, If however, this research is to be carried out at sights within the North Glasgow Trust other than the one covered by this letter, then a covering letter signedby the person responsible for the research on that site should be sent listing names, titles and addresses o f all collaborating researchers.A copy of this approval letter should also be passed to them.
It. should be noted that although. Ethics Committee approval has been granted, Trust Management approval is still required. This should be obtained through the Research &: Development Office at Gartnavel General Hospital (Miss W Burton tel No. 0115).
Kind regards.
Yours sincerely,
Fibrosis; the influence o f self-efficacy, self-esteem and chologicalmorbidity.
required the undemoted minor amendment to the Patient Information Sheet:
Under Section “Who is organising the study” - the second sentence should be deleted'. The Committee
Andrea H TorrieSECRETARY -WEST ETHICS COMMITTEE
;orporating the Western Infirmary,. Gartnavel General Hospital,ie Glasgow Homoeopathic Hospital,. Drumchapel. Hospital and BlawarthiiL Hospital
Pett85.doc 142
Appendix 4.1
Results of exploratory analysis examining factors that may impact on agreement
between patients' and health professionals' ratings of adherence.
Means (SD) and /-test/ chi-square results for physiotherapy agreement/disagreement
groups and independent variables
df Agreement
between patient
and staff
Disagreement
between patient
and staff
t p-value
Gender - - - X2 = 0.58 0.45
Age 53 25.69 (7.21) 25.88 (8.96) -0.08 0.94
FEV, 53 39.76 (18.59) 45.47 (20.92) -0.99 0.32
PIS 49 70.00(19.95) 71.93 (21.68) -0.31 0.76
PHC 49 67.88 (22.23) 77.69(16.02) -1.58 0.12
HAD-A 53 6.46 (3.14) 6.31 (3.40) 0.16 0.88
HAD-D 53 2.87 (2.47) 2.37(2.16) 0.70 0.49
RSE 52 1.50(1.89) 2.12(2.48) -1.18 0.25
SE 49 56.42 (9.55) 60.80 (9.81) -1.38 0.18
OE 49 33.83 (4.33) 34.10(5.68) -0.17 0.87
FEV, = Lung function, PIS = perceived illness severity, PHC = perceived health in
comparison to other CF patients, HAD-A = Anxiety, HAD-D = Depression, RSE = Self
esteem, SE = Self efficacy, OE = Outcome expectations
143
Means (SD) and /-test/ chi square results for pancreatic enzyme agreement/disagreement
groups and independent variables
df Agreement
between patient
and staff
Disagreement
between patient
and staff
t P-
value
Gender - - - X2 = 2.02 0.16
Age 43 23.96 (5.78) 26.23 (8.26) -1.07 0.29
FEV, 38 45.22(19.72) 43.69 (21.68) 0.25 0.80
PIS 38 73.40(19.27) 64.85 (21.52) 1.32 0.19
PHC 43 70.65 (22.22) 70.25 (19.76) 0.06 0.95
HAD-A 43 6.22 (3.27) 6.82 (3.75) -0.57 0.57
HAD-D 43 2.65 (2.48) 2.45 (2.04) 0.29 0.77
RSE 42 1.61 (2.29) 1.19(1.72) 0.68 0.50
SE 38 56.44 (9.28) 60.61 (11.01) -1.23 0.23
OE 38 33.37 (4.50) 35.13 (5.18) -1.09 0.28
FEV, = Lung function, PIS = perceived illness severity, PHC = perceived health in
comparison to other CF patients, HAD-A = Anxiety, HAD-D = Depression, RSE = Self
esteem, SE = Self efficacy, OE = Outcome expectations
144
Means (SD) and /-test/ chi square results for vitamin agreement/disagreement groups
and independent variables
df Agreement
between patient
and staff
Disagreement
between patient
and staff
t P-
value
Gender - - -
H
O©II<N
0.93
Age 56 27.22 (7.92) 23.22 (6.48) 2.11 0.05
FEV, 56 43.26(19.00) 44.31 (20.74) -0.19 0.84
PIS 51 76.04(15.51) 66.50 (22.50) 1.74 0.09
PHC 51 73.71 (17.67) 67.93 (22.54) 1.02 0.31
HAD-A 56 6.74 (3.41) 5.84 (3.12) 1.05 0.30
HAD-D 56 2.59 (2.36) 2.45 (2.23) 0.23 0.82
RSE 55 1.81 (2.00) 1.35 (1.94) 0.86 0.39
SE 51 58.21 (9.51) 58.18 (9.38) 0.01 0.99
OE 51 34.24 (4.43) 34.25 (4.34) -0.01 0.99
FEVj = Lung function, PIS = perceived illness severity, PHC = perceived health in
comparison to other CF patients, HAD-A = Anxiety, HAD-D = Depression, RSE = Self
esteem, SE = Self efficacy, OE = Outcome expectations
145
Appendix 4.2
Results of multivariate analysis of age (median split groups) and gender by each
measure of psychological adjustment.
Means (SD) for each group on each measure of psychological adjustment.
Young males
(n=19)
Young females
(n=14)
Older males
(n=21)
Older females
(n=14)
F P
HAD-A 5.42 (3.35) 5.71 (2.52) 6.81 (2.99) 7.29 (3.45) 0.01 0.90
HAD-D 2.37 (2.63) 1.57(1.50) 2.03 (2.22) 3.50 (2.88) 2.04 0.16
RSE 1.89 (2.40) 1.78(2.36) 1.76 (2.09) 1.71 (2.12) 0.03 0.96
HAD-A - Anxiety, HAD-D = Depression, RSE = Self-esteem
I?
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